More Brave Kids With or Who Had Juvenile Huntington’s Disease
Timothy James and His Brother Christopher
My son Timothy James Forever 18 graduated 2 years early passed away a month after they let him graduated. His brother Christopher also had jhd he’s now Forever 28. Together Forever In Heaven
My son Scottie. Forever age 22. Passed away from jhd on 2/14/21. He loved movies (Star Wars, Fast & Furious, super hero movies), video games, the New York Yankees and The Walking Dead. He liked listening to music and building things with Legos. He played baseball and was a Boy Scout. We will forever miss his smile and his unfailing sense of humor
Saskia was born on February 3, 1992, directly with her feet first. She grew up as a happy girl with beautiful long red hair. Around her fifth birthday her father turned out to have HD. Father and mother were already divorced by then, but Saskia saw her father often, like many girls, she was also a daddy’s child.
Around Saskia’s tenth birthday she had some motor disturbances, but these were dismissed as growth. Around the age of fourteen she became depressed and did not feel like going to school (where she was severely bullied) and stayed at home.
After nine months of investigations, Saskia was finally diagnosed with JHD. From free spirited teenager she became a homebody. Her father died at seventeen after years in a nursing home (especially for HD)Her biggest dream was to become a soldier. Computers also interested her.
Her illness was difficult, after her diagnosis she was the tenth child in the Netherlands who was known to have JHD. She has gone through all the stages of the disease. Depression, Psychoses, Epilepsy, tics, Pneumonia, Swallowing and speech problems. But Saskia and mom agreed on 1 thing she stayed at home. And that’s how her life ended on December 3, 2017 born at home, Died at home. Of course she is now at home (in her own computer which has been converted into an urn).
My Son, Brandon Duane Key Forever 25. Passed away 4-18-2021 From JHD, diagnosed at 15 CAG 57 he was so much more than a kid with JHD, He was funny, smart everyone loved to be around him , He loved Gaming, Football & Rapping Also hanging with his favorite person His Papa..We all Miss You so Much remember never Goodbye it’s until I see you again My Son. Love you!
Wyatt was A real life superhero! He bravely faught juvenile huntington’s disease and passed away at 17 years old. Helping Wyatt with his Eagle Scout project was a joint effort with wrestling and basketball…stuffed animal drive for the Beacon Center. His make a wish trip was to the National Aquarium in DC. It’s overwhelming how good people were to Wyatt. One of Wyatt’s favorite days of his life on earth was Meeting The Bengals. Today he is celebrating in heaven as his team has made the Super Bowl.
Fishing is Michael’s very favorite thing to do so we take him as often as we can. His mother was in her 30s and has been bed ridden in a nursing home for a long time now. His father passed away last year from unrelated issues. We adopted Michael so I’m still learning a lot about it.
Jenny, has JHD. When she was about 16 she started developing symptoms. She struggled in school where her brother and sister excelled, one becoming a drafter and one becoming a doctor. We couldn’t understand why she had all the problems she had. She started struggling with depression and ended up in ICU from trying to end her life at the age of 18. She started falling down a lot. Her writing became harder to read. She really struggled mentally and emotionally. People thought she was drunk or on drugs but she wasn’t. We learned her dad had HD. She went to get tested but was denied to get tested because the doctor thought she was mentally unstable and needed a counselor which she refused to go to. It would be another 2 years of wondering and hoping it was something else. She ended up in the hospital again where I talked to the doctor and told him how she needs this HD test so she can be treated right. She agreed, 10 days later we found out she had it, that was 3 years ago. She has always loved cowboy boots and shoes. She loves to wear dresses and really loves Luke Bryan. She has an 11 year old Toy Austalian dog. She loves to shop when she is feeling up to it. She is obsessed with pink and with coffee.