Lucas 21 years old and Chris Dean 18 years old Linda 36 years old
Lucas September 19, 1991- January 31, 2013 Chris June 1, 1998 Linda September 6, 1976- August 18, 2013
Chris and his brother Lucas and their mom Linda who all got diagnosed with jhd
In the late winter of 1998 i received a phone call that my grandson Lucas and his little brother Christopher were found in Oklahoma my sons girlfriend had taken off in the middle of the night in 1997 and my son for a year searched frantically for them with no luck, this devastated his life because since the time Lucas was a baby he had been going through very difficult times with Lucas mother..unbeknownst to him the cause was jhd, we had know idea she had. Although looking back i see the signs at the age of 15 in her, my son has never been the same , so they found the kids brought them back and put them in foster care and Linda in a mental institution there is where we found out she had jhd i knew a little about it from caring for a man in his late 40s that had it and i remember going to his window and looking out and thanking god that this was not in my family..it still haunts me..but i only knew of adult onset , nothing about jhd. I filed to get custody and
had a paternity test and yes Chris was ours.. Linda’s symptoms started showing at 16 as I look back,now knowing the signs,she was bedridden 2007. Linda was in the late med. stages of jhd.. she had a hard time walking and talking..but loved her kids and wanted me to care for them She was put in facility in 1999 and was cared for until she passed in 2013…all seemed pretty normal, then at age 13 i started noticing Lucas speech hard to understand, i thought he was doing it on purpose, he was more on the slower side to himself, school became harder, the teachers said it was behavioral issues he was bullied a lot, then i started wondering and got a few pieces of literature and read that it was rare but kids can get it..so i decided to take him to a specialist in seatttle wa…they did some little movement tests not blood tests for they said they didn’t see signs, a bit apprehensive i left feeling their the experts. for the next 3 years not a lot changed, teachers adored him but could not understand his speech problem and chalked it up as ADD, then at 15 and half, he started saying he was depressed and was hanging with some rough kids smoking , drinking, pot etc.
We knew something was wrong, then the question began to flood my mind, as he didnt want to go to school, couldn’t focus..so i took him to the dr. he did a few tests and sent him to a numerologist that also knew about hd..she knew.. before the blood test i could tell in her face..but did
not say she wanted more time to talk to Lucas because of his mental state was unstable at 17 it was his decision he wanted to know..positive was the outcome..devastation was the result , he tried many times to end his life always when i was around, and i was not going to let that happen..it was a cry for help, help he knew i could not give him, i work full time i’m single and have to support us all and my 78 yr. old father watches the boys and was so afraid it would happen while i was at work..so now at 19 Lucas is in a brain trauma facility 12 miles from my home, they are wonderful to him thank you god, Lucas is the dream son , kind compassionate loving, obedient..everything you want in a son,so unfair, he has accepted for now where he is and knows we love him, he loves video games, his aunt my daughter has been my right arm in caring for him and his brother..an awesome lady..there is so much more ..but i hope this will do..i also have pics of Lucas and videos i will put them in better order so you can take what you need..i thank you with all my heart that you are here for us, we want are kids to not be forgotten to this tragic disease and to let others see they are not alone, they are not weird they are just like everyone one else..only suffering from something they had no choice in. Lucas passed away and his mother passed away in 2013.
..god bless you..grandma karen
Lucas is a treasure he was always kind,and caring,he was always good to me despite thin disease and all it tried to take from him…He made friends and many liked him ,teachers parents kids animals ,he was a special gift and left be hide a lifetime of smiles he will always be missed until we are together forever He touched many he’d never met aw so Blessed xos
Chris’s He is funny ..a joker ..a gamer ..he is sensitive ..compassionate outspoken
..story teller. And quite smart ..and very good at putting me in my place lol He loves cats especially his cat Spene. He decided to go to Hawaii for his Make-A-Wish.
Here’s Chris Bucket List..
- Go To Thailand
- Ride A Zipline Through The Jungle
- Learn To Drive A Car
- Drive A Car
- Attend A “Mad Hatter Tea Party”
- Compete In A Demolition Derby
- Travel To Egypt
- Dance At A Rave
- Pet A Tiger
- Hug A Tiger
- Go Inside A Pyramid
- Bungee Jump
- Attend A Native American Spiritial/Ritual
- Shoot A Double Barrel Shotgun
- Throw A Tomahawk
- Pet A Sphinx
- See The Northern Lights
- Go To A Gathering
- Have A Horror Movie Marathon Night
- Ride A Mechanical Bull
- Go On A Safari
- Drive A Forklift
Chris is just one in his family who has jhd. His brother Lucas is also suffering from jhd. He lives in a home.. and passed away, but Chris is lucky enough that he can still be at home and they can still do as much as he can but time is always extremely limited with jhd! Please help complete his list!!
You can contact his Mom at her email firstname.lastname@example.org