Lucas and Chris Dean and Their Mom Linda
Lucas 21 year old Angel Chris 22 years old Angel Linda 36 year old Angel
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 andhad a paternity test and yes Chris born June 1st, 1998, 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 Sept 19, 1991-Jan 31, 2013, Chris passed away June 1, 1998-Feb 18, 2021, and their mother passed away in Sept 6, 1976-Aug 18, 2013.
..god bless you..grandma karen
At 11:22 Christopher flew away to be with Our Savior His Alpha and Omega his favorite verse. Rev21 6-7
Then He said to me, “It is done. I am the Alpha and the Omega, the beginning and the end. I will give to the one who thirsts from the spring of the water of life without cost. He who overcomes will inherit these things, and I will be his God and he will be My son.
I would lay down my life for Chris and in many ways I have . He’s so precious to me . we’ve been through so much in the last 10 year’s . He’s was a very unique person . But he had no happiness that lasted everyday he struggled to get through without bad thoughts . He was so smart and so funny. Witty, and when he was not angry he was very loving . Chris said grandma we Irish have a deep Sadness. Awe I wish other’s could see his Beautiful heart . I’ve found my precious material thing’s don’t matter when it comes down to it Chris is all that matters and how we can see this through . Every morning I pray God get us through this day Lord and every night I say thank you Lord for getting us through . I do have Wonderful family and people who God’s Never failed to bring me help. It’s been a very hard year yet filled with many Blessings . When Christopher was in a good mood and he talks about Jesus bits so sweet he always says , Jesus my Lord and Savior it’s so adorable when he was angry he just talks about Burning in Hell. And all the Evil in the World. Yesterday he was amazing . Praying this Morning is a good one as well.
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 was funny ..a joker ..a gamer ..he was sensitive ..compassionate outspoken
..story teller. And quite smart ..and very good at putting me in my place lol He loved cats especially his cat Spene. He decided to go to Hawaii for his Make-A-Wish.
-Grandma KarenKaren (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 WAS BE IN A BETTER PLACE THAT DAD WAS WITH HIS LOVED ONES ALREADY PASSED AND THOSE THAT WILL COME AFTER..AS CHRIS WAS 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
11 Replies to “Lucas (Lukey) Christopher Robin and Linda”
TY JACEY YOUVE DONE A WONDERFUL JOB. ON THIS SITE..PRAYING HARD FOR A CURE FOR ALL THESE BEAUTIFUL KIDS AND THEIR FAMILIES
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 ❤
Thank you its so Beautiful I just Love it and You Jacey..you take care of us all so Compassionately ❤
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 ♡♡
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.
😥 Love u ♡
I READ THIS MEMOIR ABOUT LUCAS,CHRIS AUNT KAREN
AND LINDA THEIR MOTHER,IT WAS SO FILLED WITH LOVE
COMPASSION AND PATIENCE.
JACEY MUKKA AND HER MOM JANE, REACHED OUT TO
THIS OTHER FAMILY ALSO IMPACTED WITH THIS
DEVASTATING NEURODEGENERATIVE DISEASE
THAT IS A BEAUTIFUL EXPRESSION OF LOVE
IAM HAPPY TO SEE THAT THE ADOLESCENTS AND YOUNG ADULTS WITH JUVENILE
HUNTINGTONS DISEASE ARE EVADING THE ISOLATIONA AND RAGE THAT HAS
BEEN OBSERVED IN EARLIER GENERATIONS OF FAMILIES IMPACTED BY BOTH BOTH
JUVENILE HD AND THE LATER ONSET IN MIDDLE AGED PARENTS AND THEIR PARENTS GENERATION AND ANCESTORS
ONE NARRATOR FOR THE HDSA SAID, WHEN PEOPLE UNDER THE AGE OF TWENTY INHERIT THIS DEVASTATING ,THEY THEY HAVEN’T WON THE HEALTHY LOTTERY BUT HAVE WON A LOTTERY NO ONE WOULD EVER WANT.
MEDICAL GENETICISTS, HAVE ALSO SHARED THAT IF A YOUTHFUL MEMBERS
OF A FAMILY INHERITS HD FROM THEIR FATHER,THEIR JUVENILE HD SYMPTOMS
WILL BE MUCH MORE SEVERE AS DISEASE PROGRESSION CONTINUES,AND THE
OFFSPRING MOST LIKELY END UP IN AN ACUTE LONG TERM FACILITY EITHER
ON A SOLO BASIS OR WITH OTHER JHD AFFECTED SIBLINGS WHO DETERIORATE TOGETHER
HUNTINGTONS DISEASE IS GENERATIONAL BECAUSE THE DISEASE IS AUTOSOMAL DOMINANT AND THE REPETITIONS, OF DNA NUCLEOTIDE GROUP KNOWN AS
OFCYTOSINE,ADENNINE AND GUANINE and with the continuous expansion of
nucleotide cell group ,cytosine,adenine and guanine expand like wild fire
Huntingtons Disease symptoms vary, if the CAG repetitious production is relentlesly
long like 60 to one hundred CAG repetitions,. then the speed and incapacitation
will be profound and this will drastically reduced their life expectancy.
Iam thrilled to know that there are individuals who have a pretty
good understanding,that patients with either JHD or the adult onset are not to be
feared socially, however there are a good percentage of individuals who would
freak out if a patients hands flailed in the air or made lound gibberish noises
involuntarily. I can relate to this brief shock, I was on a trip with a youth group
forty years ago, and one of the male members of the group ,had a fast moving
grand Mal Seizure,Michael started shaking violently his eyeballs rolled way back in
his head . ,I almost went through the roof of the van,and since Iam from a medical family,my parents both worked as clinical administrators in the New YORK
CITY’S department of special education and epilepsy is a common secondary
neurological condition of children and older youth who are oftenn born
varying classifications of intellectual disability.
And as a result of learning cardiopulmonary rescucitation and seizure first aid
I got up and stood over him, for the remainder of the trip home, he resumed
awareness, and his ability to comunicate with everyone and I breathed a sigh of
of relief that he was medically ok