Jay Hersho (Jaybird)
Jay(Jaybird) Hersho is the sweetest most loving young man I know. With one of the biggest hearts. He loves giving hugs, and once you get to know him, you will have a friend for life. Jay loves fishing going on hikes, swimming and playing with his cousins and friends. Though we don’t do much of that lately. I would say his favorite thing to do now a days is hanging out with his cousins. They are so special to Jay. They give him so much love and affection. Jay has a great support system from Grandma to Nana to Aunts and Uncles and cousins,and friends. Jay’s little brother Sean is his best friend and vice versa. Sean is amazing with Jay and is my biggest helper. Neither one of these boys deserves this cruel disease in there lives. Jay was diagnosed with JHD on January 8th 2018, he was 13. We noticed symptoms,looking back from the time he was in kindergarten. It was little things. Learning problems in school, then falling alot, some little problems with speech. He was first diagnosed with Pervasive Developmental Disorder, a type of autism. He hit a growth spurt one summer and we noticed a curve in his spine. After seeing a ortho doctor and learning he has scoliosis, and me complaining of him falling alot he referred us to see a neurologist. Jay’s first MRI read as Juvenile Huntington’s Disease. There was no one on either sides of our family’s that ever had Huntington’s disease that we knew of. So after many test and two years later. We took that last dreadful blood test. About a month later it came back positive! Our heart’s shattered,devastated. I still have days where I wonder how can this be real! Then the realization that me and the two other people in the room were also at risk. Now I know this cant be real! Jay’s dad is now showing symptoms and his brother is at risk. Since getting Jay’s diagnosis he now had seizures,a very hard time walking,and talking. Swallowing has become very difficult to along with alot of pain and dystonia. Jay is the Strongest and Bravest kid I know! My Warrior when he should just be a kid. When I feel like I just cant do it I look at him and know if he can go threw the worst of it then I must be right by his side. Jay smiles and laugh every day. Its unimaginable to see your child thriving then all of a sudden going back to needing full time care, words can never really express my real emotions. This is why we need a cure! To help these children never have to deal with symptoms of Huntington’s disease!
Dec 22, 2018 Surgery went well for a gtube for my baby, still sleepy! So Brave, and such a trooper! Mommy loves you so much Jay Bird! it went good were home and hes still able to eat food by mouth it's more for the nutrition and to help put on some more weight. Although the swallowing is getting worse.