Werdnig-Hoffman Disease | Country Chatter

Posts Tagged ‘Werdnig-Hoffman Disease’

Heatwole Family Reunion-2015

{ August 16, 2015 @ 4:20 pm } · { Heatwole Family, Truman, Ariel & Jase }
{ Tags: Ariel, Clinical testing for SMA, Jase Marius Yoder, Jeremy and Cheryl Yoder, SMA, Truman, Werdnig-Hoffman Disease } · { Comments (3) }

Life has been busy and full this summer and I think all the big major events have now taken place! This weekend was our Heatwole family gathering here in Powhatan. Each of us siblings (Me, Rich, Evelyn and Ed) take turns hosting. Every four years it is my turn.

My siblings/spouses and parents arrived on Friday evening. We enjoyed supper on the deck and as a side benefit watched six turkeys grazing in the field behind the house.

On Saturday the rest of the gang arrived. There were 40 present with several not able to attend. The kids had a great time playing in the wading pool and playing kick ball and corn-hole. The adults were content to sit and talk and catch up on what is happening in our families and life. I didn’t get very many pictures this year. (I’m not sure what happened to me-the camera buff that I am!)

In trying to pump up the soccer ball with more air the needle broke off in the valve. Obe tried his best but could not get it out.

The “pirate” boy (Ryan Hostetter) collided with another boy a day or so early and took a hard blow to the eye.

We had lots of good food including smoked beef brisket.

Filling the wading pool with water.

Cheryl Yoder and Jase, the newest member of the family.

Let me tell you about Jase…..

Jase was born 4 weeks ago. Remember our journey two years ago with little Ariel who had SMA? This is her little brother and he has been diagnosed with the same disease. This is devastating news not only for Jeremy and Cheryl but also for the whole family and a host of friends and loved ones who love and care for the Yoders.

Jeremy and Cheryl shared with the family where they are at in their journey with Jase and there is exciting developments in research to find a cure for SMA. Forty years ago when our two children died, there was no research, no diagnostic test, no hope. It was a death sentence with no survivors. Then came Truman in 2011 and Ariel in 2012. At that time there was a blood test to reveal the dreaded diagnosis but still no exciting medical research to embrace. I have been keeping a journal as we get information on Jase’s journey.

Family Connections: To those who are reading this and do not know the family connection…. Rich is my brother and his wife is Marj. Cheryl is their daughter and Jase is Rich and Marj’s grandson. The disease first showed up in our family when Gene and I lost 2 children with Werdnig-Hoffman disease, now called SMA: Karla in 1978 and Greg in 1982. Gene has a sister who also had a child with the disease. Years went by and then came little Truman, son of Micah and Krista Heatwole. Micah is Rich and Marj’s son. The disease had once again reared it’s ugly head. Jase.

Jeremy and Cheryl, Max, Bo and Jase

July 16, 2015: Cheryl

He’s here! Jase Marius arrived yesterday – all 9 lb 9.5 oz of him! – arrived yesterday at 3:36pm. Jase means “healer”. Marius, a take off of Mark in honor of Jeremy’s Dad, means “manly”. So grateful for this gift!

July 25, 2015

Richard called to tell us that the blood test has come back and little Jase has tested positive for SMA.

July 26, 2015

Richard & Marj sent the following note to family and friends: Jase’s blood test results came on Fri. His DNA shows the same gene abnormality as Ariel’s. He tests positive for SMA. This is an unexpected blow. Thanks for your prayers for us and ours.

August 4, 2015: Sharing our journey… from Cheryl

We’ve already introduced Jase Marius here. We’re enjoying him immensely!

We learned on Friday the 24th, half of Jase’s lifetime ago, that he is missing both copies of the SMN1 gene – just like Ariel – and is expected to be affected with SMA. In spite of fully knowing our “odds”, we were not prepared for this report. It was extremely disappointing to say the least. Many of you have been praying for our family. You carried us through the journey with Ariel and anticipated this baby (Jase) with us. Here we are in a vulnerable, heart-breaking position and find that we’re able to stand, over our heads in grace. God is with us. You can rejoice in answered prayer!

We maintain that now is the time to trust and to savor life for it is truly a gift. Look at these pictures – can you acknowledge with us that our God is beautiful and kind?

Yesterday we took Jase to the same neurologist who saw Ariel. I was not super excited about the appointment. Jase is not showing symptoms of SMA…”Why are we even going? Just to have him scrutinized and look for the problem we’re praying not to see?” But I did have some questions and it can be difficult to land an appointment, so when they had an opening yesterday we took it.

There’s a lot I could say, but to get more quickly to the point, Jeremy and I – and Jase, but he isn’t concerned one hoot about it. We left the appointment hearts throbbing with hope, kind of floored into silence, with big silly grins on our faces. We had just received really good news for Jase!

There is a lot of research going on right now regarding SMA. Up to this point it’s been, “We’re learning really exciting things, but there’s nothing we can do yet.” That was our experience with Ariel. But yesterday the doctor, for the first time in his career was able to say to someone, “There is a promising drug that is in clinical trials. There is a trial open right now. Your son looks like a perfect candidate.” That someone was us!

There is hope that this therapy could prevent the onset of SMA symptoms. There are no guarantees – this is a clinical trial. Eligible infants are those who have been diagnosed but are not yet symptomatic (which is uncommon). That’s Jase. So! We are extremely excited and grateful. We have blindly placed our hope in our strong God and it is exhilarating to feel like we very likely are beginning to glimpse His answer.

God’s fingerprints are all over the timing of test results, appointments, the clinical trial itself…. We rejoice and worship and continue to trust and pray. The medical people are in a flurry to get things moving so that Jase can enter the trial before he develops symptoms. My mommy heart has urged, “hurry, HURRY!” My heart that has been tucked pretty hard under the Father’s arm says, “He’s got this one. You don’t know how, but everything is going to be okay.”

We will probably be traveling to Chicago this week, yet, for initial screening and possibly the first treatment if everything clears. Probably. Possibly. If. That’s exactly how sure we are about what’s next. Please continue to pray. And be sure to direct all praise to God!

August 5, 2015: A note from Marj

I’m assuming ya’ll have seen the latest developments concerning Jase on FB. We’re about to leave for church, but I wanted to let you know that Jeremy, Cheryl & Jase are flying to Chicago this evening. Jase’s first app’t is at 8:00 tomorrow morning. They’ll be doing a screening to make sure he meets all the qualifications for this experimental test. Jeremys were told to go prepared to stay until Tues. Max & Bo are at Jeremy’s folks in DE. Thank you so much for your interest and your prayers. We wonder what God is up to, what may come of this; what His plan is for our little Jase. It’s pretty exciting, and a bit surreal.

August 6, 2015: A note from Marj

I just got off the phone with Cheryl. They’ve had a big day, are weary and ready for a good night of sleep. But pleased and excited with Jase’s performance today. Like Jeremy said, “he passed his tests in flying colors.” They drew blood for a chemistry panel, checked his urine for whatever, did an EKG, an EMG (shock to his funny bone to test his response – which will frequently show SMA before any other symptoms. His strength is good, they see no manifestations of SMA, and unless something shows up in the blood panel tomorrow they plan to give him his first injection on Mon. They’ll return to Baltimore on Tues.

Just for interest sake, they were picked up at their home last pm. Rode in a shiny black Suburban to the airport. Plane left over an hour late so it was 11:00 when they arrived in Chicago. They were met by a man holding a placard with Cheryl’s name on, were escorted by him to another shiny black SUV to the motel. And were at the hospital for Jase’s appointment at 8:00 this morning. Now after the blood test tomorrow, far as they know, they’ve got the rest of the weekend to wait out (while test reports come back) in the big city. I guess it’s good they’re more used to that than I am. I think I’d be inclined to stay put in my room so I wouldn’t get lost!

Praise the Lord for whatever His plan is and how He is working it out. Thank Him for the strength that Jase has today, for this opportunity, for hope. Pray that they’ll all get a good night of sleep tonight.

August 16: Pat

We do not know the future implications of the clinical testing for Jase. This opportunity is brand new and Jase is the third infant in the world to be admitted into the program since the trial opened two weeks ago. Jase will receive a series of 10 shots over the next 2-1/2 years. At this point Jase is symptom free even though blood test have revealed a grim diagnosis. Each healthy person has a SMA1 and SMA2 gene. Jase is missing SMA1 and has 2 of SMA2. Our family carries the most acute form of the disease which means the symptoms start showing at or soon after birth and their life expectancy is only 1-2 years. There are so many questions. Will God use this as a miracle cure or will it just prolong the evidence of symptoms? What happens at the end of the trial? What are the side effects? Can it really be possible that Jase could live a symptom free life? Why has this disease hit our family so many times? What is the genetic path in our family line?

Our family gathered around Rich, Marj and all their children and prayed for them. This is not just their burden, it affects us all. Micah and Krista are expecting in November and we stand with them as they wait and anticipate the birth of their little one. We value life. We know that God is the creator of all life and we do not take health for granted. In the midst of great sorrow and disappointment we have found the peace, mercy and love in our Heavenly Father in whom we can trust.

Jase means healer. We ask God for the desire of our heart, that He will heal little Jase. We know that good can come from all of our earthly struggles and trials. If Jase is not healed, we pray that his young life will at least help grant healing to thousands and thousands of other children in the future as the medical world searches for a cure. We truly desire for God to receive glory and honor regardless of the outcome.

Links to my blog posts on Truman and Ariel

Celebrating Ariel’s Life

{ April 28, 2014 @ 6:56 pm } · { Truman, Ariel & Jase }
{ Tags: I Know That My Redeemer Liveth by Jessie B. Pounds, Jeremy & Cheryl Yoder, Luke 16:22, Psalms 91:11, SMA Type 1, Spinal Muscular Atrophy Type 1, Werdnig-Hoffman Disease } · { Comments (11) }

Ariel Joy Yoder

December 27, 2012 – April 25, 2014

The death of a loved one stops us in our tracks and makes us think about our own mortality. But there is something extra sobering about the death of a child. They are not suppose to die before they have had a chance to live life to its fullest.

Yesterday we celebrated the short life of Ariel Joy who died from SMA-Type 1 (Werdnig-Hoffman Disease). In 16 months she had shyly charmed her way into many hearts. She couldn’t speak except to utter a few noises but she could smile. Her huge brown eyes would connect with the person talking to her for a few seconds as she flashed a big, wide smile. Then very quickly she would drop her gaze as she glanced to the side. It was sweet, demure, bashful and charming. If you wanted one of those precious smiles you had to drop to her level and look her in the eye.

Ariel and Grandma Yoder

She left behind no wealth, no words of wisdom, and no achievements. She never said a bad word, fed herself, or learned to walk. She was never able to approach people, they had to come to her. She left her legacy: joy in the form of her smiles, lot of smiles, and the quiet presence of a life she struggled to live.

Ariel was loved. Her two brothers adorned their little sister and her parents faithfully and without any complaint attended to her every need. Ariel went to church and she was told about Jesus and His love for her. She was prayed for by her family, extended family, church family, friends and friends of friends who fervently hoped and longed for a miracle of healing.

Ariel lost her fight to live on earth but she gained heaven’s victory. SMA is a cruel disease rubbing the body of the ability to move and grow. At 16 months she weighed a mere 10-1/2 lbs. But now she is fully and wholly free and perfectly healed. She can sing and dance, run and jump. She is celebrating life to the fullest in the presence of Jesus.

And so it causes me once again to pause and think. I think about life and what it means, I think about the finality of death and infinity of eternity. I think about choices and our ability to choose in life where we will spend eternity. At the moment of death there is no second chance, no coming back, no opportunity to change my mind. Regardless of the allotted years, I will have had my chance at life.

The last weeks had become an increasing struggle for Ariel. Breathing and eating became more difficult and she had several choking episodes. She started running a fever and about 1:30 on Friday morning Cheryl got her and put her between them in bed. At six when they awoke she was gone. We don’t know all that happens at death but God’s Word gives us nuggets of information, treasures that bring peace to our minds and understanding to our hearts. Sometimes the veil between earth and heaven is briefly lifted for someone who comes back from death and we have their testimony of life on the other side.

We know that we have guardian angels and that they do the bidding of our Heavenly Father. (Psalms 91:11) We know they come at the time of death and carry us to heaven (Luke 16:22). I envision excitement in heaven as the order was given to go and get little Ariel. Heaven paid a visit to 7300 Kathydale Rd. The angels knew exactly where to go and went with haste. Did they lovingly caress Jeremy and Cheryl as they slept and kiss them on the cheek as they gently cradled Ariel’s spirit to take her home to Jesus? Were six little cousins* and other extended family members summoned to the pearly gates to welcome her home?

Psalms 116:15 says “Precious in the sight of the Lord is the death of His saints.” As we laid to rest little Ariel we celebrated her short, sweet, innocent life not only with tears of loss and sorrow but also with tears of joy and release.

At the close of the memorial service the rafters in the Church of Baltimore rang as we sang with passion “I Know That My Redeemer Liveth” by Jessie B. Pounds.

I know that my Redeemer liveth,
And on the earth again shall stand;
I know eternal life He giveth,
That grace and power are in His hand.

Refrain

I know, I know, that Jesus liveth,
And on the earth again shall stand;
I know, I know, that life He giveth,
That grace and power are in His hand.

I know His promise never faileth,
The Word He speaks, it cannot die;
Though cruel death my flesh assaileth,
Yet I shall see Him by and by.

Refrain

I know my mansion He prepareth,
That where He is there I may be;
O wondrous thought, for me He careth,
And He at last will come for me.

*Note: There have been numerous miscarriages in the family and Ariel’s little cousin Truman died two years ago from the same disease. Someday I will write about our two children who also died of the same disease.

Ariel Joy (About her struggle to live in the last weeks)

The Life of Truman

How Truman Touched Our Lives

Wrestling With God

{ June 22, 2013 @ 8:51 pm } · { My Faith Journey }
{ Tags: Death of King David's son, Genesis 32:28, II Samuel 11-12, Jacob wrestles with God, Jesus wrestles in prayer in the garden, Not my will but yours be done, SMA Type 1, Werdnig-Hoffman Disease, wrestling with God } · { Comments (6) }

I was working in the garden this afternoon and thinking about several different situations some of our family and friends are currently struggling with. One young couple just lost their 11-month baby to a cruel disease, a family member is battling breast cancer, another young father has brain cancer with 12-18 months to live, another young couple has just learned their little 5-month old daughter has a fatal genetic disease, and a man tried to commit suicide by shooting himself in the head. Theses are hard and difficult struggles, illnesses, and situations. In the midst of these each of these situations are hurting, suffering people-people I know and care about. And this is just my small world.

I pray. Often I struggle with how to pray for situations and people. Do I plead for a miracle? Do I ask God for healing when there doesn’t seem to be hope for one? How do I have faith that can move mountains and yet yield to God’s sovereign and divine plan for my life and the lives of my friends? Do I really believe God can do the impossible? Does God ever change His mind? How can I know God’s will? I wrestle.

I know we live in a sinful world. We all experience sickness, pain, and tragedy. Someday the clock will stop for each one of us. Sometimes I grab at faith and come up empty-handed.

I thought of Jacob. He was faced with a frighting situation. Years earlier he had “tricked” his brother and stole his brother’s birthright for a bowl of stew. His brother, Esau, hated him fiercely and wanted to kill him. He fled for his life and for years lived in a foreign land where he accumulated a family and wealth. Finally, he decided it was time to go back his homeland and father. With his family, livestock and possessions in tow, he navigated by foot over miles and miles of dry, desolate, desert land. And then he received word that his brother was coming to meet him with 400 men. He didn’t know if Esau was coming as friend or foe. Jacob was greatly afraid and distressed. That night he wrestled with God. It says in Genesis 32: 28 “Your name shall no long be called Jacob, but Israel; for you have struggled with God and with men, and have prevailed.” Jacob wrestled with God. God touched Jacob and his hip was displaced. He limped for the rest of his life.

I also thought of King David. His infant son became ill and was dying. God sent the prophet Nathan to warn David this was going to happen. He had committed a shameful act and committed adultery with his friend’s wife and then had his friend killed in battle (II Samuel 11-12). For seven days David pleaded with God to heal his son. He fasted and laid all night on the ground. No one could comfort or reason with him. His grieving was so intense that his servants were afraid to tell him when his son died, worrying that he may do harm to himself. David became aware of them whispering and perceiving that the child had died asked them. They took a deep breathe and told him the truth.

And then David did an amazing thing that stunned his friends. He got up off the ground, washed and anointed himself, put on clean clothes and went into the temple and worshiped. Then he went to his house and requested food to eat. The servants asked him, “What is this you are doing? You fasted and wept for the child while he was alive, but when he dies you get up and eat food.” And David said, “While the child was alive, I fasted and wept; for I said, ‘Who can tell whether God will be gracious to me, that the child may live?’ David wrestled with God and then worshipped.

Jesus struggled in the garden before his death to accept the Father’s will for his life. Alone and in deep agony of spirit He sweated drops of blood. But then he prayed, “Not my will, but yours be done.” Jesus wrestled with His Father and accepted the cross.

It is a good thing to wrestle with God. We need to bring our problems, trials, illnesses, situations to Him. Often it is difficult to know the will of God. Often we struggle to accept and understand what is happening. The struggle to discern, understand and accept can be a heart-wrenching ordeal. Wrestling brings our burdens, desires, struggles, hopes, fears, and pain into the presence of an Almighty God for HIS attention and HIS touch. It is there I find hope, mercy, grace and sweet surrender.

I remember a time of deep wrestling for me. Our son Greg was probably 6 months old. He had a genetic disease called Werdnig-Hoffman Disease (SMA Type 1). He could not move his arms and legs or roll over. He could not even move his head from side to side. I had a friend who kept saying, “If we just believe and pray enough, God can heal Greg.” I believed in a God that healed and I believed in a God that did miracles. I also knew that Greg had a fatal disease and there was no cure or survivors. He would not live to see his 1st birthday. I wrestled with God. It was a difficult faith dilemma that I struggled to come to peace with.

One day I laid Greg on the kitchen table and took my other two children along to the barn to get a jug of milk. We were only gone a few minutes and Greg, alone in the house, was safe on the table-so I thought. After all he could not move-not one inch. When I walked in the door my heart about flipped out of my body. Greg was laying on the floor, crying with his weak, pitiful cry, gasping for breathe. I picked him up and held him tight. In that moment something very precious happened. I did not hear an audible voice but something spoke deep to my spirit. I knew in that moment that God could heal Greg. I also knew that He would not chose to do so. I will never know how Greg got on the floor (although I have my opinion) but I do know my wrestling was over. I was free and at peace.

The wrestling of other people will not spare you from your own wrestling. As I read and hear the stories of other people of faith it gives me courage. When I pray for others, I ask for miracles. I also ask for God’s presence, peace, wisdom and understanding. In our wrestling, God comes near and dear and we, in some way like Jacob, David, and Jesus, experience His touch.

Loneliness

{ June 16, 2013 @ 3:58 pm } · { My Faith Journey }
{ Tags: Deuteronomy 33:27, Deuteronomy 3:16, I Kings 19:14, Isaiah 43:1-2a, Isaiah 61:3, John 8:32, Lamentations 3:22-23, Lamentations 3:6, Loneliness, Psalms 23:4, SMA Type 1, Werdnig-Hoffman Disease } · { Comments (2) }

Loneliness is a desolate, windy path of potholes and snares.

Loneliness is a season of despair, fear and pity.

Loneliness is a brutal taskmaster as it distorts the truth and exaggerates the facts.

Loneliness is a time of sadness, pain, isolation and self-absorption.

Loneliness separates, isolates, traps and enslaves.

Loneliness is like quicksand, an ocean undercurrent, bog, pit, and dungeon.

Most of us at some time have crawled on the lonely path of loneliness. There is no peace, joy, contentment, or light on this path. Faith is weak, hope has despaired and the horizon is dark and stormy.

My most poignant season of loneliness occurred when we were experiencing the uncertainty of our newborn son’s health. When our fourth child, Greg, was born we could not pronounce him healthy even though the doctors had given him a clean bill of health. Our second child had been born with a genetic disease that claimed her life at the tender age of 5 months. When our third child, a daughter, was born her daddy declared her healthy. That was that: no fear, no worries. But with Greg it was different. With Werdnig-Hoffman disease (SMA Type 1) the child can be born appearing healthy. However, we carried the most acute form of disease, which meant by the time the child was six-weeks old the muscles would start to degenerate and life expectancy was less than one year. As we faced the uncertainty we didn’t know if God was preparing us for what laid ahead or Satan was binding us in fear.

My husband and I decided not to express our fears. A clock began to tick; our season of loneliness began. We would wait, hope, and worry. We would not bother any one else with our problem. We would wait until “we knew” for certain the diagnoses.

One Sunday after church, I was standing alone in the hallway holding my baby and listening to the chatter of people visiting. Deep loneliness washed over me. Sadness played its sorrowful tune. Fear sat on my shoulder and pity wagged a bony finger.

A few Sundays later we were ready and our pastor shared our burden with the congregation. The fellowship surrounded us with love, compassion, tears and prayers. Greg Alan did have Werdnig-Hoffman disease (SMA Type 1). Nothing was going to change that fact. But something happened that I will never forget. Fear fled and pity evaporated. My brothers and sisters became the loving arms of Jesus surrounding me. I was not alone. I still had to walk a difficult path but there were now encouragers strolling beside me. There were illuminated signposts showing the way and the potholes were covered in prayer. There were even flowers growing beside my path.

During a very lonely time Jeremiah cried out, “In dark places He (God) has made me dwell, like those who have long been dead. He has walled me in so that I cannot go out; He has made my chain heavy. Even when I cry out a call for help, He shuts out my prayer” Lamentations 3: 6-8.

Jeremiah was very lonely. He felt no one believed him and everyone was against him. He even felt shut out and abandoned by God.

Elijah had just witnessed an incredible miracle of God. It was a mountaintop experience. God rained down fire on the alter in answer to Elijah’s fervent prayer. A ferocious storm loomed on the horizon and Elijah pulled up his skirt and outran the chariot of King Ahab back to the city. When the wicked queen, Jezebel was told of the slaughter of her beloved priests of Baal she threatened to kill Elijah. In panic Elijah ran for his life. In fear he sat under a broom tree in the wilderness and self-pity became his sole mate. In despair he prayed that the God of life would take his life. Later God appeared to Elijah as he hid in a cave. Elijah whined to God, “I have been very zealous for the Lord God of host; because the children of Israel have forsaken Your covenant, torn down Your altars, and killed Your prophets with the sword. I alone am left; and they seek to take my life.” I Kings 19:14

Elijah distorted the truth and exaggerated the facts. God told Elijah to get off his duff and get to work. God also gently reminded Elijah that 7000 people in Israel had not bowed their knees to idols. Elijah just thought he was alone! His fear, pity and despair trapped him in a self-absorbed pit.

Probably the most poignant and heart-wrenching picture of loneliness is that of Jesus in the garden of Gethsemane and later on the cross. In the garden his devoted disciples fell asleep when he needed them the most. In fear and agony he sweated drops of blood. On the cross he cried out in anguish, as he felt forsaken and deserted by God.

When you feel alone, think on these things:

Be strong and of good courage, do not fear or be afraid; for the Lord your God, He is the One who goes with you. He will not leave you nor forsake you. Deuteronomy 31:6
The eternal God is your refuge and underneath are the everlasting arms. He will thrust out the enemy from before you. Deuteronomy 33:27
Yea, though I walk through the valley of the shadow of death, I will fear no evil; for You are with me; Your rod and Your staff they comfort me. Psalms 23: 4
Fear not, for I have redeemed you; I have called you by name; you are mine. When you pass through the waters, I will be with you; and through the rivers they shall not overflow you.” Isaiah 43:1-2a
But those who wait on the Lord shall renew their strength; they shall mount up with wings like eagles, they shall run and not be weary, they shall walk and not faint. Isaiah 40:31

Have you noticed that….

The windy path of loneliness is through a lush valley.
Spring follows the winter of despair.
If we abide in God’s word His truth will set us free. John 8:32
God desires to give us beauty for ashes, joy for mourning and a garment of praise for the spirit of heaviness (Isaiah 61:3).
Light dispels darkness.
Those who experience the presence of the living God soar like eagles.

Like Jeremiah I can say, “Through the Lord’s mercies I am not consumed, because his compassions fail not. They are renewed every morning; great is your faithfulness.” Lamentations 3: 22-23

Written February 15, 2004

How Truman Touched Our Lives

{ March 18, 2012 @ 2:40 am } · { Heatwole Family, Truman, Ariel & Jase }
{ Tags: death, John 14:2, Krista Heatwole, Marj Heatwole, Micah Heatwole, Psalms 116:15, Rich Heatwole, Spinal Muscular Atrophy Type I, Truman Heatwole, Werdnig-Hoffman Disease } · { Comments (4) }

Gene and I were asked to share at the funeral how Truman touched our lives. I share what we wrote as it gives another insight into the life of little Truman.

Note to clarify our script for those who aren’t acquainted with the family: Rich (my brother) and Marj Heatwole are the parents of Micah. Micah and Krista are the parents of little Truman Lane.

Pat…
Several days after Truman was born, Richard called. He said, “We’re concerned about Truman, he’s not moving. I thought you might like to know.” A sword pierced my heart. Memories came flooding back; I remembered the journey we were called to walk, not once but twice. I began praying for Micah, Krista and Lincoln knowing deep in my spirit that they were probably called to walk the same path as Gene and I.

Gene…
So many times in our lives we ask why do bad things happen to good people and it has been discussed who knows how often. When a trial like this comes into a young family’s life it is heartbreaking experience. We also know that when we do go through it, we can look back and there are many goods things to be thankful for. Thirty-three years ago a radiologist at St. Mary Hospital read an x- ray one night of a baby with a collapsed lung and pneumonia, not knowing that it was his niece, our daughter Karla. What a comfort it was when Uncle John Reed appeared in emergency room to console and counsel us before we made the trip to MCV (Medical College of VA). And there was Uncle John again several years later when our 2nd son Greg coded in the hospital and then revived to come home. We always appreciated Uncle John & Aunt Carolyn and Aunt Ruth because they were the Harrisonburg family connection in Richmond with us close by in Powhatan.

I tell this story because little did we know that when we took a vacation in 2007 and attended Micah & Krista’s wedding in Alabama that Pat & I would forge such a profound connection. Numerous times Micah & Krista have made trips to Powhatan just to visit, help us on moving day in our store, or to buy chickens & other stuff that they was looking for. We have had some neat times on their trips to Powhatan.

Little did we know that this friendship was preparing us to share the same sorrow. The beauty of this is that because of our experiences we have been able to share and console Micah & Krista from our hearts as they have made this journey.

Pat…
One day in January I came to Harrisonburg and spent the day with Krista. This was very special and I will always remember and treasure our talk that day, we did some laughing and we did some crying. I don’t think there was much we didn’t cover. We talked about our struggle in understanding healing, dying and death. We talked about decisions, feelings and coping. We talked about this devastating disease (Werdnig- Hoffman Disease) and what they could expect-I could only share from my heart what we had experienced.

Truman was fussy. He was beginning to have some sucking problems and was struggling to get enough to eat. He was hungry, but he had got himself all worked up and exerted too much energy crying that he didn’t have the strength to eat. Finally I said to him, “Truman, stop it.” I had hold of his little hand and started talking to him. I told him he was going to die soon but he would get to see Jesus. We talked about his little siblings (Krista’s has had two miscarriages-I believe there has actually been 5 miscarriages in this Heatwole family) that he would get to see his Grandpa Truman. His little eyes were red and puffy but for a few minutes he cooed and chuckled as I talked. Sometime we wonder… what do babies know? Do they feel fear? Does he wonder what is happening to him? Was he frustrated that he could not turn his head and kick his feet? Did he feel trapped inside a body that would not function?

On Monday Micah called and invited us to come to Charlottesville to say goodbye to Truman. We were so humbled and honored to be included in this special time. We will never forget standing in his room by his crib watching him struggle so hard to breathe and live. They had inserted an oxygen tube forcing air into his lungs-which were partially collapsed. His diaphragm was doing all the breathing which made his belly expand with each breathe. I took his little hand in mine, pressed his fingers around mine. He still had a little strength in his fingers has he held on to my finger. As I talked to him, I again talked about heaven, Grandpa Truman and his siblings and cousins waiting for him there. Several times he opened his eyes for a few seconds, ever so slightly-you could see his eye move as if he was trying to see me and then they would close. Truman was still with us.

As Micah, Krista, Rich, Marj, Gene and I gathered around his bed we prayed for little Truman, calling on our Heavenly Father in his mercy to gently come and take him home. It was a holy moment.

Times like this cause us to touch eternity. Somehow I could envision heaven all astir. Heaven was preparing for little Truman’s eminent arrival. Jesus himself said, “I go to prepare a place for you” (John 14:2). You prepare a place when you anticipate an arrival! Jesus was getting Truman’s mansion ready. The Psalmist said, “Precious to the Lord is the death of his saints” (Psalms 116:15). It struck me in such a new way how this little family was on God’s mind-right now. God was very aware of what was happening here on earth in the hospital room that night. God was getting ready, ready to give the order to bring little Truman home. Had Grandpa Truman and other family members been alerted to head towards the gate for the grand welcome home party? Was the room filled with angels just waiting for the order to carry his spirit home? I glanced around the room just in case I saw one! It felt like we were standing on the threshold of heaven in the presence of God.

Gene…
God was intertwining our lives for this heartbreaking time. We understand the heartache, the pain, the uncertainty, the doubts, the fears that they are experiencing now. We also know that because of all the love that surrounds them and God’s grace, they can have hope for the future. There will be dark days ahead, but brighter ones will come and time is a great healer.

Pat…
Truman was a little trooper. He fought the fight and gave it everything he had. Sin and death won and he is gone. But God has the final victory-Truman lives again. Truman has touched us once again with eternity. He lived 4 short months but his life was complete. He can not come back to us but we can go to him.

Gene…
We love you, Micah and Krista

The Life of Truman

{ March 14, 2012 @ 12:47 am } · { Heatwole Family, Truman, Ariel & Jase }
{ Tags: genetic, Krista Heatwole, Micah Heatwole, SMA Type 1, Spinal Muscular Atrophy Type 1, Truman Lane Heatwole, Werdnig-Hoffman Disease } · { Comments (8) }

Note: These are posts (mostly by Micah) on his fb page. I have been coping them and keeping them in a journal.

This journey for them has been especially tender and dear to my husband and I as we have walked this same journey twice with two of our children who are waiting for us in heaven.

Four short months but a life complete!

November 7, 2011
Truman Lane Heatwole was born at 10:45 pm last night! I am a proud dad once again! =) PTL

November 9, 2011
Truman Lane could use some prayers right now! To make a long story short he doesn’t have much movement of his arms and legs. It doesn’t seem as though his muscles have developed properly. We are praying that they will grow so that he doesn’t have to have more test done. This is obviously a very short note about a complicated thing but prayer isn’t complicated so CARRY ON!! =)

November 18, 2011…Back from the doctor. The standard test they ran on Truman came back clear. So now the next step is going to University of Virginia (UVA-Charlottesville, VA) to get genetic testing done on him. We are thankful for all the prayers and are thankful that the ball has started to roll into finding out what the problem is! Continue to pray for us and pray for a clear diagnosis!
November 21, 2011 …Truman will be going for genetic testing at UVA (Charlottesville) Nov. 28 at 9:30! Thankful that God opened this door because they were saying it was going to be three weeks before they could get him in!
November 29, 2011…Well we had a successful appointment today for Truman, but the waiting isn’t over. In about 2 weeks we should have some test results back and if they come back negative, then more tests will be done and so on until they find something or he starts moving!!! 🙂 Thanks for all the prayers being sent up on our behalf!
December 6, 2011 …We got the results from Truman’s test back today. It was not great news. He tested positive for Werdnig Hoffman disease. We are still praying for a miracle, but we are also aware of the fact that unless there is one we will probably be laying our little boy to rest at some point. We thank everyone for their prayers and support!

December 12, 2011…What a path we have been called to! The doctors visit, on Friday at UVA, went well. We didn’t really know what to expect. It was mostly talking to doctors, counselors, and people we will need to see in the future. A lot of talking about the decisions we will need to make in the future. Sunday night was a special night for us. Truman played baby Jesus in the church play. I will admit it was more then a little emotional to see him up there. It was so sad but yet so sweet at the same time! He was representing the part of Jesus and he may also be the first to see Jesus! Exciting but conflicting stuff!

Continue to pray for us and Truman!

December 23, 2012: Truman…Truman…..Truman! I have been told that it is a time for me to give an update……so here goes! =)

What a blessed man I am! Being that it is the season of Christ; I have been thinking a lot about the blessings that I have been given! It is easy to get discouraged and question God in the hard times, but GOD IS GOOD! Christ is worthy of my praise! When I look at the situation we are in with Truman I sometimes think of Mary. (Jesus’ mother) The doctors have given my child a death sentence. There is really no hope without a miracle!…… I wonder if Mary would have felt this way at times. Did she know the prophesy? Surly she would hear the stories of the coming Messiah, and what the prophets said about how he would suffer. When she looked at Jesus did those thoughts go through her mind? Mary probably wondered if such a sweet baby could be hated by men, could carry the sins of all men, and be the Son of God? When I look at Truman; he also seems to perfect to have a death sentence! He is starting to grow and get a personality. He looks up at me with the sweetest of smiles. Can there really be a problem with him? NO!! TRUMAN IS PERFECT!!! When God created Truman… He was pleased!! And so am I!! I am thankful for Truman just the way he is! I don’t know the plans God has for him, but He does have plans! We have seen and answered prayer this week! Truman for the last couple of week has been a really bugger! Constant fussing, not eating well, and always needing to be held. For me (and Krista) this became very frustrating! We were in constant prayer, no longer praying for a miracle, just praying he would stop crying!!=) I got very discouraged! One night, after giving up trying to fall back asleep, I went out to Krista and said, “it is not enough that our son is going to die.. but he is going to be a pain the whole time he is here.” (I immediately felt guilty for saying that and slunk back to bed) =) Well, God must have heard my frustration that night! Since then it has been like a light-switch was switched! He has been so much more of a joy to be around and much more content! THANK YOU JESUS!! Here we are in the season of a Miracle! I am praying that this Christmas Christ would do a miracle in the life of Truman, and I am also thanking Him for the miracle He has done in MY life!! Continue to remember us! We are in constant need of prayer and support! Thank you so much for caring for us!

December 31, 2012…Truman…over Christmas we were down in FL. We had a great time of being with both sets of parents! It is a bit strange that both my parents and Krista’s ended up in the same small town thirteen hours away! Christmas was both a happy and sad time for me. It was a joy to celebrate the birth of my savior, and to reflect on what He has done for me! But it was also a sad time… realizing that next year our family may not be complete! This past week Truman has began to fuss a lot again. Nearly every time Krista would feed him he would only nurse for 3-5 minutes before throwing a fit. After being in contact with his doctor it was decided that he should go in for a visit. So yesterday he went to the doctor. Up until this point the whole ordeal with Truman has seemed like a dream. We know that there is a problem, but there haven’t been many signs other then the lack of movement. Well, yesterday it became more real. At the doctor they said that they are starting to notice signs of deterioration: quivering tongue, swallowing problems, and lack of energy. It is a sad realization of what may be in the road ahead! The thought of having to watch our son die over a several month period is stating to look like an unbearable task! We are praying for a miracle, but realize that there may not be one! I was thinking recently about Jesus in the garden. He prayed “let this cup pass from me.” God did not remove the cup! One thing I do know…. God will give Krista and I the grace and strength to come through! We are in desperate need of prayer! I thank everyone who has been praying for us, but I think the hardest days are still to come! Another thing that you can pray for is Lincoln! He has become very attached and protective over his brother! Pray that his heart stays soft to God through this process. We haven’t said anything to him about there being a problem, but I am sure that day will come! Lord, give us wisdom!

January 7, 2012…Truman…the last week has been one with ups and downs. It has been a hard week but it has also been one with little victories. As I have written in other posts Truman has been fussing more. Swallowing has also become difficult at times. Due to these factors his doctor wanted us to be evaluating him last weekend. They had given us a few pointers and ideas and wanted to see if they would help. Well, Sunday was probably the most difficult day so far! I was leading praise and worship Sunday morning so had I left for church early. Truman hadn’t eaten much during the night and had only drank one ounce in the morning. During the service Krista flagged me down. Truman was crying really hard and was really weak. He struggles with swallowing so when he doesn’t eat, he gets weak, and it becomes even harder. I ended up going to Wal-Mart during the service and getting a bottle so we could force feed him. Eventually he got enough so he was strong enough to swallow again. It was really hard! It was a first glimpse of what it may be like to have to watch our son die. It is so hard to watch him struggle with living! Since Sunday we have changed a few things. We have decided to bottle feed. This has helped a lot! We can now know exactly how much he is getting and he also seems to like it better. He has gained some weight and seems a little stronger. So we are thankful. Another thing we learned is that he loves to move. No matter how much he is fussing, if we start moving his legs or arms he will stop fussing! I can’t imagine how annoying it is for him that he has energy but can’t move much! Thursday we got our family pictures taken. The photographer came to our house. It was a really special time! We look forward to sharing them with you when we get them back next week! On Friday, it was such a blessing that my sister Kendra could come over and help Krista! Krista was able to get some house work done and was able to go into town and spend some time by herself! Friday was a special day for Truman and us. It was Truman’s 2 month birthday! Krista and I have decided to celebrate his month birthdays since he probably won’t have years. It was special to have my “brother” Philip and his wife and my two sisters, from Baltimore, and their families (minus Jake) here to celebrate. We are blessed! Because of some of Truman’s issues, they have moved up his UVA appointment to Monday morning at nine. Continue to pray for us as we go through this! Pray that God will give us wisdom as we work through different decisions we need to make. We need wisdom! Thanks for walking with us!!

January 24, 2012

I, Pat, spent the day with Krista and this is a pic I took of Truman. He was fussing and fussing. I finally told him to stop it and started talking to him about heaven and his grandpa Truman who was there waiting for him. He started smiling and cooing.

Micah’s Picture.

February 9, 2012…Truman….we had a great visit to the doctor (doctors) yesterday. The appointments were supposed to be Wednesday and Thursday, but God worked it out that all our appointments were done by 1 p.m. on Wednesday! It was a long day! It started out with a rough night. Truman has been needing to be feed at least every three hours. We think this is because of some deterioration. That makes for some short nights, especially for Krista! So Wednesday morning we sleepily left for UVA at 7. Our first appointment was with the lung doctor at the hospital. As of now Truman’s lungs look clear and seem to be doing fine. Because he can’t cough we have been outfitted with a hospital grade suction machine, and are waiting to get a cough assist machine. The suction machine has a catheter that can go the whole way down to his lungs and suction out anything that may be in the way. I am not sure how the cough machine works yet but it somehow simulates a cough. The next appointment was also at the hospital with the feeding tube specialist. Truman hasn’t gained any weight in the last 3 weeks. We have decided to go ahead and implant a feeding tube. They are working at lining up a time to meet with the surgeon and get it put in. This will include a hospital stay for Truman down at UVA but it shouldn’t be more then a couple of days. Our third appointment was with his regular doctor over at Kluge Children’s Rehab. It was a sad but also good day! It was sad because it is just another step at realizing that this is for real! It was hard to talk about getting a feeding tube especially. It was also good because we have known that it has been coming for a while and it will let Krista and I get more rest at night. A year ago we never would have thought that we would be able to get though this, but God is good! He has given us the grace we have needed. We are thankful for the Christian body that has surrounded and lifted us up in so many ways! It has been such a blessing to have Krista’s friend from Alabama here the last two weeks! She left today and I am already starting to wonder if Krista has the energy for our two needy boys! Thanks so much for all your prayer and support! One more thing. We had some prayer cards made. They have four pictures on the front and a write-up on the back briefly giving a description of the situation. If you would like one or know someone that does they will be available at our church (Dayton Mennonite) or can be picked up at our house. If you have any questions about them or anything else about the situation feel free to ask! Thanks again!!

February 16, 2012…Truman….tomorrow we head to UVA again. We will be meeting with the surgeon and doing some per-surgery things. Truman may be spending a couple of days there this weekend depending on when the surgery is going to happen. We welcome all prayers! =)

February 17, 2012…We are home again! Krista and Truman to. Tru’s surgery is scheduled for next Thursday so we will go back down there for a couple of days then! Thanks for your prayers!

February 22, 2012…We will be leaving for UVA at 4:30 in the morning. Pray for Truman as he has surgery and gets a feeding tube! Also pray for strength for Krista and I!

February 23, 2012 …

7:37 AM…Truman went into surgery around 15 minutes ago

12:36 PM Truman is now out of surgery and we are up in a room. Truman was NOT impressed the first few hours out of surgery. He also had a reaction to something which caused a rash. All Things seem to be going well now though. He is sleeping and his rash has cleared up. Thanks so much for your prayers and support!

2:31 PM… well the sleep didn’t last long. Truman has been crying most the time he is awake. (which is most the time) I think that main thing is that he is really hungry. He hasn’t eaten since 4 this morning and wont be able to eat until the morning. =( Pray that God will give him peace in his heart and contentment in his tummy!

February 24, 2012

2:08 PM Truman has been doing really well today! It was such a blessing that last night he was able to get some sleep! He has been able to drink a little milk today. They are only letting him eat small amounts every three hours. He is not impressed with stopping but is being a good sport. We will hopefully be able to come home tomorrow morning. Pray that Krista and I won’t get to hyper because it does get boring here! =)

February 25, 2012…We are all home and resting soundly! Thanks for all your prayers and support. We are so glad to have this behind us!

February 26, 2012

March 5, 2012

March 10, 2012 (Saturday)
5:56 PM Truman…well, it has been awhile since I updated. I don’t have time right now to give as detailed of an update as I would like! Truman does now have his feeding tube and it has been a real blessing so far. Krista and I would especially covet your prayers now. Krista and Lincoln have been fighting a cold the last week. It is a cold that causes lots of congestion. It seems as though Truman is now getting it. This is a fairly serious problem. In the last few hours it has been a struggle for Truman to breathe correctly and comfortably. Please pray that he will be able to get some rest and Krista and I would have wisdom and peace! Thanks!

March 11, 2012 (Sunday)
9:20 AM…Truman…Well, His night was better then expected! After I sent out the first update, Truman was able to calm down and his breathing became a lot better. This morning it is once again a struggle. Continue to pray for us! These are trying times!!

2:28 PM… Pray for Truman! He is in serious condition! Pray that he will either go peacefully or that he would pull through easily! Thanks.

3:03 PM… We are waiting on an ambulance to take us to UVA.

8:50 PM Truman….what a day! Truman will be at UVA for the night. Tomorrow we will decide what to do. They feel like he will make it through the night, but the prognosis isn’t good. Thanks for your prayers and continue to lift us up!

Posted by Marj (Truman’s grandma) on fb…We are at UVA. Truman’s cold turned very serious early afternoon. Twice they tho’t they’d lost him. After consulting w/ dr. Micah called G&W (a medical transport) to bring him to where his doctors are familiar with his disease. He’s on oxygen now, with c-pap. His little tummy still really goes up & down but not like it was. This sudden plunge came kinda sudden. Please continue to pray for Micah & Krista. It’s a hard time.

March 12, 2012 (Monday)
8:16 AM …Truman…during the night the doctors did chest x rays and found that Truman may have Pneumonia. They are now treating that. He seems to have stabilized in the night some and his breathing doesn’t seem as labored. I don’t know what Truman will be like when we take him off all the equipment. I am confident from talking to the doctors that if we hadn’t come to the hospital when we did that he wouldn’t be alive now. Pray that Krista and I will have wisdom on how far to go medically, and when it is time to just lay him in Jesus hands to take home.

2:50 PM …well, this is quite a journey! We are so thankful for all our friends and family that are lifting us up. It is humbling to know that so many are lifting us up in prayer! Some of you don’t even know us! Well, we are at a crossroads. There have been decisions that have been hard to make through this whole ordeal, but none that are quite to the degree that the decisions have been today. We have decided to keep Truman on his breathing assist for today and tonight. If there haven’t been any improvements by morning we are planning or releasing him to Jesus. Our prayer is that if it is Gods will for us to keep him here that there would be a clear sign during the night. The hardest thing would be if there was just a little improvement in the morning! Thanks so much for all your love and encouragement!

March 13, 2012
Truman Lane Heatwole ….went to be with Jesus a little before 11 this morning. We are sad for our loss but have complete peace! Truman also is at peace and I am sure he is using his energy to run around with our other two children and a few of his cousins! That is sweet to think about! Lots of love and thanks from us! Continue to pray for us as this is just the beginning to a very hard week!

Thanks so much for all the prayers and support! Funeral service is as follows:
The funeral will be taking place at HARRISONBURG MENNONITE on Friday night at 7pm. This is due to a wedding going on at our church on sat. Try to make sure people that want to come know this. Friday At 5 pm there will be a meal. The meal will be served from 5-6. This is open to everyone that wants to come. Krista and I will be available to talk to people during this time. The funeral service will follow at 7. We will have the burial on Saturday at 10am. This will be at DAYTON MENNONITE. This is also open to anyone that wants to come.

Jeannette Heatwole captured a neat picture of the sky this evening. We are calling it “Truman’s sky”!

More pictures can be seen on Molly Whitmore’s blog http://mollywhitmoreblog.com/2012/04/05/the-heatwoles-family/ . Molly is a professional photographer who took awesome pictures of Truman and the Heatwole family several weeks before his passing. You will truly be blessed. Thanks, Molly!

Country Chatter

Posts Tagged ‘Werdnig-Hoffman Disease’