Support Evan's Journey with Juvenile Huntingtons Disease

Hello, I am Valerie Struthers. My youngest son, Evan, who just turned 16, was just diagnosed with Juvenile Huntington's Disease. This is a neurodegenerative, progressive, terminal disease that has no cure yet. There are also no medications to slow down the progression. Usually, this disease doesn't start showing up until the mid-thirties, so the earlier the symptoms start, the quicker it progresses. Hearing this diagnosis has been so heavy on all of us, especially hearing this news at 16 years old. Since his father has it, he knows how terrible and scary it gets over time. This disease causes the brain to deteriorate more as time goes on. The speed of progression is unpredictable, but I have seen his symptoms progress over the last 4 years. This is considered a family disease, all my kids have a 50% chance of having this gene. There are so many things he has wanted to do that I could never afford because I'm on disability due to my rheumatoid arthritis. I can't even afford to take him out and do fun things. This has been so overwhelming for all of us. Evan is the sweetest, kindest, most respectful, and empathetic teenage boy you will ever meet. He just donated 20" of his hair to Wigs for Kids for his 2nd time. He has always wanted to travel. He loves the ocean and road trips. He wants to see the world. My wish for him is to give him the best life I possibly can so he can enjoy it while he is still able to. I want to make as many memories as our family possibly can for him. We are taking tons of pictures for albums that he can always look through as he will continue to have more memory loss. There's no way to tell how quickly his cognitive decline will go. We will be forever so grateful for anyone and everyone who can help us give him the best life possible. Small or large, anything is very much appreciated. Prayers are always needed. Please spread the love and share this with everyone you can. God bless all the sweet, compassionate souls. We thank everyone in advance for all your support to make my baby's wishes come true. Peace and love to all.