September 28, 2019

Our Shining Star

NB: If you're reading this on a smart phone, it may look easier to read by turning your phone horizontal)

Sheldon James Brown, born in Oklahoma, on 2nd May 1991, and passed away 1st October 2004 due to Juvenile Huntington's Disease.

Before I start this story, sent in by Sheldon’s Mum, I thought I’d share the beautiful tribute that Sheldon’s Sister, Amy, wrote:

“There never was a bigger heart. There never was a more alive spirit. There never was a more captivating smile. A heart so strong, but a body so frail, he was everything God created people to be. The perfect brother, the perfect son. He was the sunshine of our lives. Although he couldn’t tell us in his words how much he enjoyed his life, he said it all within his smile.”

On May 2nd, 1991, Sheldon was welcomed into the world by his doting mother, Lisa. Lisa, the core of a loving family, in the city of Altus, Oklahoma. A perfect baby, reaching milestones like walking and talking by the time he was 6 months. A true star! Lisa is desperate to honour his legacy and share his story, and soon it marks 15 years since his passing. She wants his story heard, to encourage more people to join the fight in curing HD.

She feels that there is not enough awareness of Juvenile Huntington’s Disease – and I couldn’t agree more. It is my pleasure to share gorgeous Sheldon’s story. Having my four year old daughter, Rosa, I found this hard to read. This could so easily have been me and Rosa.

“I will never forget the day I took him to see a specialist neurologist in HD. He was just 5 years old when the neurologist watched him and remarked:

“I think your son may have HD”

I honestly think my heart stopped for a moment.”

“When the test results came back, with 98 CAG repeats, I knew it was bad. I also knew that my Sheldon was special, and would fight this disease. Sheldon was so special, so mischievous, and even though he struggled to get his words out, he would always make sure he got his point across. He would be cheeky to restaurant waitresses and would never let his disease stop him from smiling.”

“Losing Sheldon at 13 years old, is the hardest thing I have ever had to face. I truly believe it is the hardest thing any parent could face, losing their child to any horrific disease and watching it slowly, without being able to stop it. He was robbed of everything a little boy should have had growing up.”

“He could not walk without falling, he could not speak coherently. This all got taken from him when his seizures started at age 9. He could not even play like a child should play. But we made sure that every day he lived, he had joy. Even with all the pain my baby endured, he had a happy life. He suffered most of his life but did it with a smile and dignity. There was not a person met Sheldon and didn’t comment on his strength and gorgeous smile. My husband (Sheldon’s stepdad) shared an incredible and beautiful bond with him too.”

“We lived in and out of hospitals until a week before he took his final breath. In his final trip to the hospital, he had several episodes of apnoea (stopping breathing). We would be asked to leave the room whilst they worked on him. It was then that we had to make the agonising decisions on what measures we would allow them to now make on him. For the last 5 weeks of his life, he was not even allowed to be fed through a tube. He only had intravenous fluids. The disease ravaged his beautiful, innocent body.”

 “A few days before he passed away, he opened his eyes to look at me (and poke his tongue out at me!). It was like he was doing this to let me know he would be ok, that’s how it felt. I whispered into his ear that ‘Mommy would be ok if he needed to go’.”

“He passed away a few days later, in my arms, after we noticed his breathing becoming more and more shallow. We took off the oxygen, and he took his final breath around 30 minutes later, with his family and friends beside him. As we turned the oxygen off, I remember crying, pleading, “please God, I’m not ready”, I was hysterical, screaming. As his breaths became shallower, I used a stethoscope and listened as he took his last breath, and his last heartbeat. That way, for me, I had heard his first and last heartbeat in this world. I removed all his tubes, and he just looked perfect.”

“My faith pulled me through this time, I didn’t know if I would have the strength to hand his tiny 30lb pound body over at the funeral directors, but I knew I had to keep my end of the bargain and I had told him I would be ok. I HAD to believe that God needed him, more than we did right now. I try to thank God and be grateful for the 13 wonderful years we had with Sheldon with a smile that would light up the world. He was carried to his final resting place by our local firemen, who had visited him in school and sat to have lunch with him.”

“I know religion is not for everyone, but for me it has pulled me through the most traumatic of times, and the hardest grief. It has been tested so many times, and the only thing that keeps me going is my promise to my son that I would see him again someday! I believe that God allowed Sheldon to take his first steps early, as he knew this would be taken from him. This comforts me in my darkest times. Thinking of the song we played at Sheldon's funeral also helps me through, Dixie Chicks, 'God Speed'. No other song could have been more perfect.

"The lyrics sing 'Godspeed little man, sweet dreams little man, oh my love will fly to you each night on angel's wings, Godspeed'."

“I know first-hand that HD has no age limits. HD has no mercy. We have to find a cure so that no one has to endure seeing their child waste away at the hands of this cruel disease.”

“Sweet dreams my sweet baby boy, I will see you again running and playing like you couldn‘t do on this earth. When I am as courageous as you my boy, I hope I can tell your entire story one day. I write this through tears and hold onto precious memories in my heart forever.”

Sheldon’s biological father passed away from HD, as did his other son who was just 12. Their story can be read in the book “Faces of Huntington’s”.

Thank you Lisa for sharing such a personal part of your journey with us all.

If you're worried about Juvenile HD, or want to find resources to support your children with having HD in the family, please see the "Useful resources" page where you will find details for the Huntington's Disease Youth Organisation (HDYO).

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