Brandon Key
25 Year Old Angel
Brandon was diagnosed in April 2011 with Juvenile Huntington Disease a genetic disorder that slowly kills brain cells that control our everyday functions as walking, talking& thinking. Mental issue as well there is no CURE or Treatment average life varies 10-15 yrs.
Brandon was always a hyper child was diagnosed as ADHD age two. By 4th grade he started having decline in his learning abilities so we held him back worked more with him. Things where looking up than by 5th grade he started getting into fights a lot, contently getting kicked off the bus. By 6th grade age 12 we started meds and therapy things wasn’t getting better.
By 7th grade age 13, he couldn’t stay focus grades keep going down, always getting himself kicked out of school, taking off at home spending hours trying to find him. More meds by this time he was diagnosed with Adhd, anxiety, depression, intermittent explosive disorder. Seeing a therapist and phycologist one school based the other doc recommended, still not a lot change.
By 8th grade 14-15 yrs old Finally I wrote school board requesting their help in evaluating Brandon so we can get him right help. I was contacted back and the process began 6 month evaluation. They had conclusion and I was told unless I have the gentic testing that HD could be ruled out they where at a stand. Talked to his doctor told me they don’t recommend I test him it could change his whole life. I was lost, in denial this was an option for my son. After 3weeks I agreed to the testing, appointment was made. Going into the office talking with the doctor, social worker I keep going back in forth with the idea. We walked to the lab as they took 6 tube of blood from my Red.
3 weeks go by finally the call I dreaded was here it was confirmed he had not HD but JHD a more aggressive form of HD, my heart just dropped all the negative thought came rushing yo my head, I gave my self time to think before telling Red.
By this point he was moved to alternative school, was on probation for battery charge at age 15, he was getting quite a record.
One day driving home for school, I told Red doctor called got result do you wanna know. He looked at me said I already know. I asked him how? He tells me he knows he different than all the other kids. I just wanted to cry, but didn’t. I did tell him he had it that was end until his 1st neurology appointment.
There we meet a social worker from hdsa Leo, he was great came to school talks to the staff about jhd what they could expect things my help, Wayne township school and staff where amazing thought whole processes. Things kept getting harder for Red it was to point I was afraid he may hurt someone or himself from taking of from school so we pulled him out.
I also was worried about him having kids, the idea of him getting someone pregnant. Them be in the position I was in, I couldn’t stop thinking about it so I talked to his doctor it was a process but they said a vasetomy can be done in his situation. So we had it done. JHD stops with him.
He kept getting in trouble he was removed from my home moved in to grandpa for months because of a conflict with my youngest son court felt Austin was not safe with Brandon we played it out finally judge let Brandon come home dropped all charges. Ironic situation, taking out of context.
Age 16 legal stuff just stopped. Age 17 He was moody loving one minute than could be extremely violent. We found out his father is at late stages of HD and was in a nursing home with his older sister who also battling HD, double shocker since his father was never involved, he tried at 1st but never followed through. I did take Brandon to see him until he decided he we didn’t want to go anymore. Unfortunately his father passed away June 2014 this year age 37.
Brandon was 18 soon to be 19 next month. I just legally got guardian ship over him, hard choice to make but I wanted best for him. I did what I needed to make that happen. He had stop and started taking his medicine for the last two year. Last year he had been consistent on taking them, ya he’s skipped a few, we also have increased them a few time. This has been beyond an easy road, and still it was not be an easy one as we kept traveling down the path of JHD, but we never let JHD take over my sons life he always had control the best he could… This is just a small summary of Brandon’s story, awareness is everything we will never give up hope for a CURE.
Brandon was just not about Juvenile Huntington Disease he had dreams and ambitions. He wanted to be the next Eminem a rapper , he dreamed of being a famous football player but from the youngest memory he wanted to join the army. Brandon had a great personality, fun & loving he had a special gift with animals loved cats, he had many along his lifetime, his favorite color was lime green. Unfortunately Brandon declining had continued as JHD took his independence by time he was 20 bedridden, unable to use his hands, as his mother I became his full time caregiver. As years went by their where quite a few times we thought we was going to lose him but he had a fighting spirit. His Papa was his biggest fan everyday no matter what the weather was he come over @ 6:00am help me get him bathed, meds & fed it was his special time with Brandon, papa was Brandon’s #1 person too, a bound like no other. Unfortunately like all the end came to soon hardest last months. Brandon lost his battle @ age 25. December 28,1995-April 18, 2021 at home in his room surrounded by his loved ones … Not a day doesn’t go by my heart doesn’t ache for my son but I try to take peace and comfort believing my son is whole again watching over all of us …
JHD Initiative 