Jesse David Lyons

JESSE DAVID LYONS was born July 9, 1982. He was 24 Ibs. and 37″ tall at age 11 years. He wore 2 hearing aids, braces on both legs and feet, and had gone completely blind at 9 years. He wore glasses from age 4 and this was the time his hearing had begun to deteriorate, also.  He used a wheelchair and he loved what little bit of independence this gave him.  He was quite good in maneuvering his wheelchair around. At age 9, he was in Special Olympics and raced his wheelchair, even though he was blind.  He got a silver medal in this event. He also loved ball. His favorite pasttime was pitching a baseball. He was in the softball throw event, also, and he again took a silver medal. He was so proud that day when those 2 medals were placed around his neck, not to mention how his Dad and I also beamed from this great day for Jesse.

 

The other love of Jesse’s life was driving.  The Dream-Factory, a local organization that makes dying children’s dreams come true, presented Jesse with an electric “Ferrari,” a bright red, shiny car just his size. He loved this car. It was given to him on his 10th birthday, but his vision had gone so far by this time that he didn’t get to use his car much, only a couple of months.

Jesse loved life, he never complained, even though every thing was such a stru^ gle for him. He loved being outside, going fishing, playing ball and driving. Many times his Dad would set him up on his lap and let Jesse drive the van where there was hardly any traffic.

His favorite foods were hot dogs, French fries, noodles and M & M’s. He loved M & M’s the most.  He also loved to chew gum and “smoke” candy cigarettes.

Jesse’s health was pretty uneventful until March of ’93. He was hospitalized for what the doctors believed to be a heart attack at first; they later said congestive heart failure. When he was sent home in April, they gave him 30 days at the most to live because of the extreme condition of his heart. We prayed and took life one day at a time. The doctor saw him again in June and was amazed he was still alive and that his heart had dramatically improved. They couldn’t understand why.

Well the day we got home from the cardiologist’s office, feeling great that it was good news for once, we got the phone call from the nephrologist, a kidney specialist, that Jesse’s kidneys were failing rapidly, that he had less than 101 function and needed to decide about the dialysis. We chose to go with dialysis and Jesse again was hospitalized in August.  On the 13th, surgery to place the peritoneal catheter into the abdominal cavity was performed. All went well. The dialysis started a few days later because of the extreme failure of his kidneys. This is when trouble began. Jesse developed fevers, vomiting, and severe diarrhea. He then had to have a tube down him for nourishment, but this didn’t work either. Lab tests came back that Jesse had a severe peritonitis (infection in the sterile wall of the abdominal cavity). Of all the peritonitis infections he could have contracted, he got a yeast infection, which was incurable without the removal of the catheter. However, Jesse would have probably died in a couple of days with removal or during another surgery. Our options were to 1. allow Jesse to die in the hospital or 2. take Jesse home and continue to try the dialysis and fight the infection with antibodies. The doctor suggested I take him home and not medicate or dialyse- and make him as comfortable as ‘possible and let him die as there was no reversing this infection.

We chose to bring him home. We also continued to medicate, we continued to dialyse and we prayed. They told us he would not live for more than 2 weeks if we kept on trying to treat him, and only a few days if we took their advice and stopped the medicine. We brought Jesse home Sept 17th and fought with him for his life. He seemed to be getting better a couple of times. He even went trick-or-treating on Halloween, but this infection just was not going to go away and eventually had spread to his blood stream and brain. He could not sleep or eat or drink and the last week of his little life was a living nightmare. We placed Jesse on the couch in the living room and the whole family camped out on the floor around him, day and night. We were afraid to fall asleep, that he would suck his last breath and no one to hold him. He was placed on oxygen (for comfort) and had slipped into a drug induced coma from the morphine the nurse had to give him to control his pain. For 7 days, Jesse had no water or food as he could no longer swallow and an IV could only hinder his condition (as the fluids would not circulate) as his circulatory system was shutting down. On Sunday morning at 6:00 AM, I picked him up and sat on the sofa and called my husband, Dave, next to me. It felt like the time was getting very close and at 6:15, Jesse took a short breath and sighed. He died in my arms, and for this I do thank God.  I also asked that he would slip away peacefully in my arms, unafraid and feeling safe.  That morning was a religious experience for me and my family…let me explain. You see Jesse’s eyes were never focused correctly and had so much infection in them that they appeared to have little pits or lesions on them. When he took his breath of life and let it out, his eyes miraculously came into focus and turned extremely blue, they no longer were clouded over and gray-like. He looked as if his vision were restored. He looked just like a Saint. We tried to close his eyes before they came to take him away and they wouldn’t shut. His eye lids seemed to be hard like stone and he looked so beautiful and peaceful as if God had finally healed him. Jesse was loved so very much and he gave so very much love to everyone who came in contact with him. Jesse Lyons changed a lot of hearts and touched a lot of people in his short 11 years on earth and will never be forgotten by family or friends.

I was very fortunate to have been his mother. We usually try to take credit for what we teach our children. With Jesse, he taught us. Our lives will never be the same without this brave little man, but we are all much richer for having been able to be a part of him.

Jesse has 3 brothers, Joshua 8, Frank 22, David 25 and one sister, Heather 16. His brother Joshua also has Cockayne Syndrome, but at this time in his life is doing well. He has lost much of his hearing and wears 2 aids. He also wears braces on his feet and legs, but his vision seems good for now and he can get around with a walker. He has not yet become wheelchair bound. Joshua is very out-going and loveable, like his brother Jesse was. Amazingly, he seems to be taking Jesse’s death with more understanding and acceptance than the rest of us. Every morning he kisses his brother’s picture before leaving for school and tells me that Jesse is up in Heaven and he’s running and playing.

I pray for all the angels of Cockayne Syndrome and for a cure before there are any more deaths. You as a parent of one of these very special little people surely must agree they are truly Angels and we are very lucky to have been chosen to care for them.

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