Lucas (Lukey) Christopher Robin and Linda

Lucas and Chris Dean and Their Mom Linda

Lucas 21 year old Angel Linda 36 year old Angel

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Chris and his brother Lucas and their mom Linda who all got diagnosed with jhd

lucas and chris with their mom linda

lucas and chris with their mom linda

lucas and chris with their mom linda

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 Linda..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

linda and her love

linda and her love

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

Lucas and Chris

Lucas and Chris

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

About Lucas

lucas (2)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

About Chris

Chris’s He is funny ..a joker ..a gamer ..he is sensitive ..compassionate outspokenChris

..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.

-Grandma Karen

Chris

Chris

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 suffered from jhd. He 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 awedraw50@aol.com

chris (10)Karen (Lucas 21 and Linda 36 passed away and Chris 18 is still alive)  JHD Is the most awful Disease out there It is So Heartbreaking And takes our Children from us, Many times even before they pass ..Children with this terrible Disease Are the Bravest Kids I’ve ever seen ..They Are my Heros ..With the Biggest Hearts and the Best Smiles ..We Will always Be Praying the Cure is Near ..For Our Kids

A YELLOW BUTTERFLY THAT MADE A JOURNEY FRO TERESAS TO NEISHAS TO JACKIES DOWN HWY TO IN FRONT OF THE BUS SHAWNA WAS RIDING HOME ON TO DADS APT. THE TUES BEFORE THE SHORT JOURNEY DAD WOULD TAKE TO HEAVEN THE NEXT NITE..MY MOTHER FULFILLED MY SPECIAL WISH..SHE GAVE ME A SIGN ID ASKED FOR MANY TIMES IN THE LAST 2 YEARS AND NINE MONTHS..A BUTTERFLY..AND SHE CONFIRMED IT AND SENT IT TO EACH OF US..BUT IT DOES NOT END THERE..AS I WAS SITTING OUTSIDE , HOME FROM THE MEMORIAL WITH RICHIE SHAWNA GARY AND ADAM..I WONDERED WHAT ABOUT DAD..HIS SIGN..A BIRD FIRST CAME TO MIND..THEN I THOUGHT BUTTERFLY? AS LOOKED AT GARY..HIS HAT HAS A EAGLE ON IT..I THOUGHT YES THE EAGLE..A BIT LATER CHRIS HAD WENT TO THE STORE WHEN HE CAME HOME I WAS UPSTAIRS HE CAME TO ME RIGHT AWAY AND WITH A URGENCY..HE WAS STANDING THERE..TELLING ME THAT WHEN HE CAME OUT OF THE STORE THERE WAS A INDIAN MAN STANDING THERE WITH LONG BRAIDS..A SPECIAL NECKLACE..AND A CAP ON WITH..A BEAR ON IT AND A DREAM CATCHER ON IT AND IT SAID NATIVE AMERICAN..CHRIS SAID TO HIM..MY GRANDPA PASSED AWAY TODAY AND HE LOVED THE NATIVE AMERICANS ..THE MAN SAID WE HAVE BEEN HERE FOR HUNDREDS OF YEARS..THAT DAD WASB IN A BETTER PLACE THAT DAD WAS WITH HIS LOVED ONES ALREADY PASSED AND THOSE THATLucas WILL COME AFTER..AS CHRISWAS SAYING THIS HIS EYES WERE FILLED WITH TEARS YET HE KEPT TALKING..THE MAN WENT ON TO SAY HE IS WHERE THE BEAUTIES OF OUR EARTH , THE TREES THE ANIMALS ARE ALL AROUND HIM..AND THAT DAD WAS HAPPY...THEN CHRIS SAID YOU KNOW GRAM..MA..THE BUTTERFLY..AND HE WAS CHOKING UP HE SAID A YELLOW BUTTERFLY FLEW UP BY THE MANS FACE AND HAIR..HE GRAM THAT ISNT A COINCIDENCE..I KNOW THAT IT MEANT SOMETHING..AND THEN GRABBED ME AND HUGGED ME SOBBING.SQUEEZING ME..AND I KNEW I DID NOT HAVE TO LOOK OR ASK FOR A SIGN THAT IT HAD ALREADY BEEN SENT..TO CHRISTOPHER..TO LET US KNOW THE INDIAN AND THE BUTTERFLY ARE ONE AND THEY ARE WITH US AND WAIT FOR OUR GRAND ENTRANCE TO PARADISE THREW A CHILDS EYES HE COMPLETED THE WHOLE PICTURE AND I WANTED TO SHARE THIS WHILE IT WAS FRESH IN MY MIND SO I COULD SAY IT AS CLOSE TO HOW CHRIS TOLD ME..WOW.WHAT A WONDERFUL FAMILY WE WERE GIVEN..I AM IN AWE..XOXOS NOW ITS BEEN1 YEAR AND 11 MONTHS SINCE MY FATHER PASSED AND WE HAVE LOST MY SWEET AUNTIE AND MY GRANDSON CHRIS S BROTHER SUDDENLY AND UNEXPECTEDLY.THEY PASSED 5 DAYS APART AND ALL LAST SPRING AND SUMMER WHITE BUTTERFLYS WOULD COME TO ME OUT ON MY BREAKS,AND A WEEK AFTER LUCAS PASSED I WAS SITTING ON MY BREAK AND WISHING TO SEE A BUTTERFLY WHEN I WENT INTO WORK AND WENT TO THE REST ROOM ,LOW AND BEHOLD WHEN I LOOKED INTO THE COMMODE THERE UNMISTAKABLY IN THE WATER WAS A CATAPILLER ,IT SHOCKED ME AT FIRST,BUT THEN I REALIZED,MY AUNTIE WITH A CRAZY COOL SENCE OF HUMOR WOULD PULL IT OFF AND SHOW ME THAT OUR LUCAS HAS WENT THRU ENOUGH AND WILL BECOME THE BUTTERFLY AND SURE ENOUGH ITS BEEN COMING TO SEE ME AGAIN ..TRUE STORY
Memorial Lucas

Memorial Lucas

Lucas and Chris

7 comments on “Lucas (Lukey) Christopher Robin and Linda
  1. KAREN says:

    TY JACEY YOUVE DONE A WONDERFUL JOB. ON THIS SITE..PRAYING HARD FOR A CURE FOR ALL THESE BEAUTIFUL KIDS AND THEIR FAMILIES

  2. karensheros says:

    JHD has lost its hold on our Lucas,he is FREE..thank you Jacey for keeping his memory alive…and All of our Angels…i pray my words bless you as you have blessed me ❤

  3. Thank you its so Beautiful I just Love it and You Jacey..you take care of us all so Compassionately ❤

  4. karensheros says:

    Beautifully done.💜💜💜

  5. karensheros says:

    Just watched this Beautiful Video I am touched beyond word’s only my tears of love could express my deepest gradatude from the compassion held in your soul Jacey. Jane ♡♡ The most beautiful video I’ve ever seen ♡♡

  6. Leslie woodland says:

    Karen please get a hold of me I’d really love to see Christopher shawna messaged me. I am so very sorry for your loss Lucas and Christopher have always been in my heart.

  7. Traci Pratt says:

    😥 Love u ♡

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