More Kids With JHD

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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

Scottie Glunz

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. She was 25 years old. Of course she is now at home (in her own computer which has been converted into an urn).

Brandon Key

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 Niemann

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.

Michael Heinze

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 Groff

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.

Laci Mccue

Laci bravely fought Juvenile Huntington’s Disease and passed at 37 years old. So horrible no human being should have to go through that disease it’s just not right . When Laci came home to pass she was totally covered in bruises from flailing herself around it wasn’t a pretty sight to see and her 3 boys didn’t see her for 4 months because was getting bad ..and when they did they all 3 cried so hard it was heartbreaking..t he middle son said what he #$‰ Happened to my mom ?so so sad when people have this disease they aren’t really living they are just existing in a world only they know she wanted to go she said to me so many times toward the end I’m done I can’t live like this ..and I would say to her you want to go with Jesus and she would say yes. …This is so heartbreaking for our family for she was a beautiful little girl ..with a big smile ..who was known by many many people and they loved her..a she came home to die with hospice care and her family with her she was a wreck she fought her death for 8 hours and her boys loved her too..she was a good mom ..her oldest son graduates next year and she doesn’t get to be there that stinks NEVER IN MY LIFE HAVE I SEEN Disease ruin so many lives and its just getting worse and more people are getting it ..thank goodness for hospice and she also had people praying for her at her bedside..a miserable life she had. I hope in my lifetime I see someone get cured because want to give that person the biggest possible hug you could ever imagine.

Tiffany Rae

Tiffany is 29 and has Juvenile Huntington’s Disease. She started having severe behavior changes and fighting depression between 14 and 16. She was seen in neurology at 14 and they didn’t feel there was a need to do genetic testing at that point. As clumsiness and mood swings progressed through her teen years it became apparent she had HD. When she was tested she was diagnosed with JHD the first Juvenile case that we knew of in her family. She lost her Great Grandma, Grandma, Aunt & Dad to HD she has 3 younger siblings at risk that haven’t been tested yet. Tiff is very outgoing and funny! She is always happy and loves holidays, decorating, parties and costumes! She loves shopping and shoes Lol She doesn’t have any children so she definitely loves spoiling her nieces and nephews.

Arian Proctor

Arian’s CAG is 67. She started showing symptoms quite young, but we were unaware JHD was even a thing. Her dad has it, aunt, grandfather died from it, and I think he got it from his mother. Now, I am worried my 19 year old son may have it. My daughter lives in a group home an hour away, and lately, have not had her home because I’m afraid. She is hallucinating and paranoid. She wished for a neon green bass guitar from Make-A-Wish. She wishes she could get a different wish now. She didn’t get to play it very long.😢 Her favorite color is green. She is 21 years old now.


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