The heroes of Chelsea’s Hope that will not be forgotten

Elisa Brackin

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(October 7, 1998 – March 10, 2015)

Elisa was born October 7, 1988. She was a normal, happy healthy child. She excelled at school and was always a “little Sweetheart.”

In March of 2003 we were on an all-girl cruise in Mexico. While on an off-board excursion, Elisa had her first seizure. I did not know what was going on! We thought maybe something may have stung her. She was rushed to the hospital in Puerta Vallarta, checked-out, given some anti-seizure meds., and we finished our cruise.

When we returned home we went to a neurologist, had an EEG, and all the other tests done. It was determined she had epilepsy and that anti-seizure drugs would let her live a pretty normal life.

Well for the next three years everything was fairly O.K. Elisa graduated from High School, rode her horse, swam, rode her quad and even held a job and started college. But we did notice a big change during her Senior year of high School. Her grades dropped, she was tired all the time, she became clumsy and she got lost or distracted easily. When she got her license she was terrible driver. We thought it was just her, but it turns out she was having absence seizures all the time! Needless to say, she does not drive anymore.

In 2006-2007 we started see a new neurologist, Dr. Ronald Bailey. We did more tests, different drugs etc. Dr. Bailey referred us to Dr. Kim at UC Irvine. We did the weeklong EEG test, and while we were there Dr. Virginia Kimonis, a geneticist, did some tests. She found the “Lafora,” but we still did not understand what we were dealing with. No one really told us what to do or what to expect. We have been to Stanford, UCI, and our latest journey took us to UCLA where we met Dr. Antonio-Delgado Escueta.

Elisa is 21 now and she can still walk if we hold her hands. She barely speaks, cannot read anymore. She spends most of her time sleeping or watching DVD’s. She still smiles a lot, but she does not understand things. We won’t tell her what is wrong; there is no point to that. We take her to as many places as we can. We got to NASCAR at the California Speedway, Big Bear, and the desert where she loves to ride in the dune buggy with her dad. We try to keep her life as happy and fulfilled as possible.

Elisa has been sick now for seven years. Time is running out. We need to find a cure. Dr. Escueta is our only hope right now. He needs donations towards his research.

Please donate to “Chelsea’s Hope,” not just for Elisa, but all the kids (young adults), that deserve to live their lives.

Sincerely,

Tom, Mari, Will and Elisa Brackin

LAFORA’S CHILD

I SIT AND WONDER,
I SIT AND THINK.

MY MIND STILL FUNCTIONS,
THOUGH I CAN NO LONGER SPEAK.

I FEEL SO ALONE,
INSIDE MY HEAD.

MY WORLD CONSISTS OF T.V.,
MY ROOM, MY BED.

I ONCE HAD FRIENDS, WENT OUT AND HAD FUN.
NOW I SIT LONELY, AS IF I AM SHUNNED.

I AM STILL ME, I SHOUT FROM INSIDE!
THOUGH NO ONE HEARS ME, SO ALONE I RESIDE.

LAFORA IS ROTTEN, TERRIBLE, EVIL!
BUT WORSE THAN THE DISEASE, IS WHAT IT DOES TO MY PEOPLE.

YOU SAY YOU LOVE ME, MISS ME AND WILL VISIT.
WORDS ARE EMPTY PROMISES UNLESS YOU ARE VIGILANT.

DO WHAT YOU SAY, SAY WHAT YOU MEAN.
DON’T LOSE ME IN THE WORDS, PLEASE COME CLEAN.

I AM STILL ME, YOU ARE STILL YOU.
IF WE WERE FRIENDS IN THE BEGINNING,

WHY SHOULDN’T THE SAME STILL RING TRUE?

Written by Mari Brackin, Elisa’s mother

Parent Diaries

August, 2010
March, 2012
December, 2012
December, 2013

Douglas Jacob Lucken

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Hanford, California

(April 27, 1992-July 26, 2011)

Hanford Sentinel, July 26, 2011
Local Inspiration DJ Lucken Dies by Brandon Santiago

Douglas “DJ” Lucken, whose struggle against a debilitating genetic disease was chronicled in The Sentinel, died Saturday at his home in Lemoore surrounded by his family. He was 19.

“Our family has been so touched by the support from the community, especially the students at Lemoore High School,” said Christina Zigler, Lucken’s mother. A memorial car wash is scheduled for 10 a.m. Wednesday in the Lemoore Kmart parking lot; students also held a candelight vigil for DJ Sunday night.

“These kids have demonstrated so much compassion in our time of need. Just as they said that Doug amazed and inspired them, these students have amazed and inspired my family by how quickly they rallied to honor him. In just a day they put together a car wash and candlelight vigil.”

Students at Lemoore High have been very supportive ever since a story about Lucken ran in The Sentinel in January 2010.

The students, staff and school administrators immediately created a special fundraiser called “Doug’s Daily Dollar,” which successfully raised $10,000 to help with Lucken’s treatment. He was also voted prom king at the 2010 Lemoore High School junior-senior prom. The vote had been nearly unanimous. Principal Rodney Brumit said Lucken received several hundred votes, while his only competitor got about five. “It was pretty touching,” Brumit said in a previous interview with The Sentinel. “This group of kids, they’re pretty amazing.”

As an incoming freshman at LHS, Lucken had an unreserved passion for school and anything that allowed him to learn — he also had dreams of becoming a pro motocross rider.

In September 2006, his dream ended when he had his first seizure while outside washing his mom’s truck. He was rushed to the hospital and put on eight different medications — mostly all to help control seizures. The doctor caring for him advised that he undergo genetic testing for the extremely rare and “unlikely” disease Lafora — an inherited and progressive type of epilepsy caused by a mutated gene. The gene is created when two rare genes, one from each parent, are combined.

On Aug. 6, 2007, nearly six months after the tests, he and his family were devastated by the news that he did in fact have the Lafora-causing gene. Reported in only 11 children in the U.S. and 200 worldwide, Lafora disease begins in late childhood or adolescence and becomes progressively worse over time, usually taking the life of the person in two to 10 years. A little more than a month ago, Lucken had a bad episode of seizures and it was decided he should be kept home and under hospice care. When he died this weekend, there were no seizures; he simply went to sleep. “It was very peaceful,” Zigler said. “There was no pain. He just wasn’t ever really the same after that last bout of seizures he had a while back. But we did get one last smile from him before he went. He was a fighter, he fought and fought for years.”

Biography

Douglas Jacob Lucken (DJ) was born on April 27, 1992 in Lemoore, Ca. He has been a very happy, fun, energetic and very intelligent child. He always learned very quickly. His passion has always been riding and working on bikes. Doug absolutely loves school and currently he is still doing that.

In September 2006, at the age of 14, he had his first seizure. At the time we never saw it coming. We thought that it was just heat or just an adolescent seizure. He was referred to a neurologist in Hanford, CA. The doctor had him on 8 different medicines, Depakote was one of them. He was taking 5000mg of that a day along with an anti-anxiety medicine. It seemed as though it was just making him lethargic. By December of 2006, Doug was having trouble walking, standing, and doing the everyday things he used to do. We noticed that he was having full body spasms, twitching, jerking and some incoherency. We thought that it was just the amount of medicine. The doctor was stumped and referred us to UCSF neurology clinic for further evaluation.

In February of 2007, we went to UCSF for a consultation. At that point that doctor that was evaluating him said that he wanted to keep him there. We never expected that either. We were only there for a consult. They kept us and de-toxed him off the 8 different meds that he was on. We were given to the Chief of Neurology, Dr. Hutchison. Doug did so well coming off of everything. No twitching, jerking, spasm or anything. In the 15 days that we were there they kept him hooked to the EEG machine to see where the seizure could be stemming from. They found nothing. About 7 days into the stay Doug had a seizure and at that time he did not have the EEG on. Towards the end of the stay Dr. Hutchison faces us with the decision to do the genetic testing for Lafora Disease. He said it is very rare, but Doug probably didn’t have it but he wanted to rule it out. So we did the testing.

On August 6, 2007 we were given the horrible news that my beautiful baby boy had Lafora Disease. As you all know and have experienced that is devasting. Douglas has progressed downward since then. He is now on 6000mg of Keppra a day along with 6mg of Ativan a day. He is drooling now, has a hard time sometimes using the bathroom on his own. He does have twitching, jerking, problems swallowing and memory loss as well. We also battle with mood changes. He gets very angry sometimes. He has seizures and they seem to be in the early mornings between 5-7am. They last for about 30 sec to 1 minute. They are starting to get a little more intense.

He is such a brave little soldier. He still gets to go to school, but he is half days now. Doug looks forward to going. He still wants to ride his bike, skateboards, work with tools, but this disease is just eating at his poor little body. We have also chosen not to tell him about his condition. My family and I feel that he has been stricken with such a terrible disease that why break his heart. Let him live each day to the fullest and let him think that he always doing his best. With the help from my husband, his step-father, my sister, Judy and Dave, he is able to keep going and keep that smile on his face. We are very fortunate to have lots of help.

We often take life for granted!! My family and I have learned that the little things in life are the most memorable and the things that you used to worry about are really not that serious. Each day that Doug gets up with his smiling face is a blessing to all of us!!

– Provided by Christina Zigler, DJ’s mom

Press

The Hanford Sentinel
July 29th, 2011

“Family, Friends Honor DJ Lucken, Recall Cherished Moments”
by Brandon Santiago

“Life is not measured by the number of breaths we take, but by the moments that take our breath away,” was repeated often during the memorial services held Thursday morning for Douglas “DJ” Lucken at South Valley Community Church in Lemoore. The quote was even engraved on one of the frames holding Lucken’s pictures inside….” [Read more.]

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The Hanford Sentinel
July 26th, 2011

“Local Inspiration DJ Lucken Dies”
by Brandon Santiago

“Douglas “DJ” Lucken, whose struggle against a debilitating genetic disease was chronicled in The Sentinel, died Saturday at his home in Lemoore surrounded by his family. He was 19….” [Read more]

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The Sentinel
June 18, 2010

“Make-A-Wish Grants DJ a Trip to the Track to Meet his Hero”
by Victoria Jones

“Douglas “DJ” Lucken is in a hotel in Pleasant Hill today awaiting a meeting with his hero, Dale Earnhardt Jr. at Infineon Raceway in Sonoma.

DJ recently was selected by the Make-A-Wish Foundation of Central California because he has Lafora disease, a progressive form of epilepsy characterized by recurrent seizures and progressive neurologic degeneration.”[Read more]

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The Sentinel
May 5, 2010

“A Royal Night for DJ”
by Victoria Jones

“Douglas Lucken poses with Ellie Aguilera Saturday night after the two were named prom king and queen at the LHS junior-senior prom.

In what the principal describes as a spontaneous incident, Douglas “DJ” Lucken was voted prom king at the 2010 Lemoore High School junior-senior prom held on Saturday night.” [Read more]

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KSEE News
March 29, 2010

“Lemoore Students Raise $10K for Classmate With Rare Illness”

This article is no longer available online.

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DJ is shown shortly after his first seizure at age 14.

The Sentinel
January 16th, 2010

“DJ’s Hope”
by Melissa Knopp

“He was a healthy 14-year-old boy with a smile that stretched from ear to ear. As an incoming freshman at Lemoore High School, Douglas Lucken, or DJ, was popular with the girls and had a knack for working on bikes…” [Read more]

Diane Victoria Gellel

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Diane was a young lady with so much potential, she was smart and athletic and just a beautiful person inside and out.

She was a joker who always made her family laugh, She loved to help others who were less fortunate and had dreams of one day becoming a lawyer.

On October 24th, 1991 Diane had her first seizure playing a volleyball game after school.

We thought, “ok, she has epilepsy, with medication this could be controlled.” After a while, we started noticing that she was having involuntary jerks and that’s when we knew something was just not right.

After months and months of testing, we got the news that no parent should ever have to hear, Diane had Lafora Disease, a very rare form of epilepsy that had no cure.  I remember a nurse saying, “Take good care of her she is going to need you,” and she was right.

For the next 10 years we watched our daughter fight this horrible disease, first loosing her ability to walk, then her ability to function on her own in any capacity, and for the last few years this vibrant beautiful young lady could not even tell you hello.

Lafora took the life of our daughter on January 12th 2001 at the age of 22.

– Provided by Diane Victoria Gellel’s Family.

Chelsea Marie Sinclair Merrill

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July 1, 1996 – August 19, 2014

Chelsea was born on July 1, 1996. She was our fireworks celebration that year. She entered the word a normal, healthy young child. This was latest blessing, from God. She was very vocal and pronounced her arrival with a bang, very fitting for the fourth of July. She had a very normal and carefree childhood. She loved school, her friends and her older sister Caitlin. She always opened up her heart to everyone she came into contact with. She especially loved her grandpa Raymond Sinclair. When Grandpa and Grandma Elizabeth came over she just smiled as big as she could and hit the ground running for a hug and a kiss, it also never hurt that grandpa always had a special treat just for her.

Chelsea has such a big heart and an infinite love for her mother Melissa. When we told her that mom was going to have another baby her eyes lit up and she beamed with joy that she was going to be a big sister. She turned into mommies little helper and assumed control of little brother Cody’s care upon his arrival. She always gave her all as she grew up, getting into sports like softball and basketball but her true love came in the form of horseback riding. She started taking lessons in her 4th grade year and she was instantly hooked. Her love of animals started to become very prevalent in her life. All through elementary school Chelsea was all that she could be. She was really taking life by the reins and blossoming into a very wonderful young lady.

Upon entering into middle school, things started getting difficult for her in her studies. We had an IEP put in place but had no idea what was in store in the next few years. Chelsea struggled with her schooling, over the course of the next few years while Lafora had already started its nasty work, we had no clue that our little girl was suffering from this hideous disease. It was not until the end of her eighth grade year that her symptoms started. She came to me and said “Dad I have a twitch in my eye.” At first, I didn’t think anything of it but when she came and said I have a twitch in my arms and legs, we became nervous. Our PCP told us it was a form of tics. We really became worried when the twitches became jerks and Chelsea said, “I see fireworks”. That stared us on our journey for a diagnosis in the fall of 2011.

We had our first EEG in the fall and were told that her whole brain was misfiring. Our neurologist put her on Depakote but that was all. She responded for two weeks but went the other way after that. Such was the case and frustration for the next several months. We received a diagnosis of juvenile myoclonis epilepsy in March of 2012. She was put on Keppra along with the Depakote and with the same results as before she went backwards in just a few weeks. As our frustration mounted with the fact we could not get any more testing done by the neurologist, her symptoms got worse and on July 26th of 2012 she had her first tonic clonic seizure. Finally after another neurologist and three more tonic clonic seizures we got to Maine Medical Partners and doctors Alexa Graig and Peter Morrison.

We entered the hospital for our monitoring and testing. Her medications were played with and on the day we were to come home she had her first round of multiple tonic clonic seizures. Her meds were redone with a few more added to get her stabilized. We were sent home two days later with our little girls on six meds and told we had to wait for the test results. Genetics test were performed and that is where I first read about the five Progressive Myoclonic Epilepsies. When I read about Lafora Disease I stopped and started praying no not that. I feel like I picked my own poison because that is what our diagnosis would later reveal after further testing in Boston Children’s Hospital in December in 2012.

After our stay in Boston our journey took us to Crotched Mountain Rehab Facility, we have finally brought Chelsea back home. With our lives in turmoil along with all the other families, we struggle to deal with all of the changes on a daily basis. This has taken a drastic toll on our entire family and while we struggle to pull together we take each day as a blessing from God. We also pray daily for all of you parents whom have come before us and have paved a small path for us to follow. Opening up a small window into our future has been very helpful as we struggle with our daily ordeals while waiting for Dr. Minassian to perform the miracle we all so desperately wait for. I have finally connected our doctors with Dr. Minassian and with his insight he is offering us ways to control her seizures better and reduce the number of meds Chelsea is on.

Parent Diaries

April, 2013
August, 2014