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

avatar

Sonam Ahmed

/by

Nottinghamshire, United Kingdom
(1991-September 15, 2008)

Since the age of 7 Sonam lived with her mother sister and brother. Sonam was the oldest of the 3 siblings. Sonam was born in 1991. We live in Nottinghamshire. In the United Kingdom. Beloved Sonam Ahmed ended up in hospital just 6 weeks before her 14th birthday. The primary diagnosis being epilepsy. Four and a half months into her hospital stay Sonam was diagnosed with lafora. As a devastated mother my world had fell apart, Sonam was my right hand person. Words could not express the heart ache and grief I had felt. I felt I had been stabbed in the heart. How could my right hand person have a medical condition for which there was no cure? Sonam loved writing and reading, her handwriting was so immaculate. At her junior school she won the hand writing competition 3 years in a row. Sonam, loved dancing music and makeup she loved dressing up. Most of all she loved spending her mothers hard earned cash on Fashion and jewelry. Sonam was beautiful and vibrant and very popular amongst her friends. My little girl wanted to be a barrister. My little girl had a diary for every year of her life since the age of ten. Sonam was an ordinary girl with extordinery talent. She wasn’t blessed with a life.

As a teenager Sonam went to Chilwell School in Nottinghamshire. My daughter loved school and loved her friends. During the most difficult years of Sonam’s life, when she was doing really, really poorly and she was even unable to make facial expression, her friends continued to visit her. That’s what I call true friendship and commitment from her friends.

During the three years she remained in poor condition. Lafora robbed my child of her liveliness and it robbed her of the precious years of her life. Sonam fought against being in a wheel chair she fought against being fed via a g-tube. During the last 11 months of my daughters life she was completely bed ridden. There was no facial expression and lots of anti epileptic drugs had been tried but there were few that suited her. Sonam ended up in intensive care on at least 3 occasions and just before she died she was pronounced brain dead. My daughter gave up her fight for life on the 15th September 2008. My eyes cry the tears of sadness and my heart weeps for the girl I had hopes and aspirations for.

One day I asked my daughter if there was anything that she wanted that I could buy for her. Sonam’s words were, “I want a life mum and you can’t give me that.” I felt so small I couldn’t give my daughter a life which was a basic human right.

More recently Chilwell School have put up a memorial for Sonam and foxwood special school did the same for her. We, the family would like to thank the schools in being part of Sonam’s life when she most needed schooling. From being a perfect teenager her behaviour became some what challenging and both schools tried really hard with her to keep her in school as long as possible.

We had to move house into a bungalow as Sonam began to struggle to get up the stairs. Moving home into a bungalow was a financial struggle as we had already moved home 16 months ago. Not everyone is in the same fortunate situation as us.

My heartbreak does not stop there. To add to my distress, Sonam’s two younger siblings were also diagnosed with lafora. I brought 3 beautiful children into this world however I did not expect to bury my children during the time that I am alive. The hardest thing of all is that my children want a life, they want to go out in the big wide world and live, and they may never get that opportunity.

– Submitted by Sonam’s mother, Shekeela Ahmed

Rebecca Cotton

/by

(February 17, 1990-March 1, 2016)
Cape Cod, Massachusetts

It is with heavy hearts that our family has to announce that Becky has lost her life fighting this horrible disease. She was so strong and brave during these past years. We all could not be more proud of her. She passed peacefully with her family there.

Our prayer is that no more families have to suffer at the hands of this horrible disease. Thank you to everyone who has prayed, supported the cause, and supported our family. We could never thank everyone enough.

 

We would love for you to meet our daughter, Rebecca Cotton, ’Becky’ as her family and friends call her.

 

 

 

Becky is a beautiful spirit who loves her family, has a smile that lights up a room, and whatever anyone needs, Becky is there…always. Her dream was to be a Marine Biologist since she was a little girl, her love for animals shows from the tiny lady bugs that sit on a window sill that she would gently carry to the outdoors to her precious cats and guinea pigs she has at home. We have a large blended family, Becky has her Mom and Dad, (Monna & Jim) a step-Mom (Lynn) and four sisters with many aunts and uncles, grandparents and cousins and nephew. Recently, Becky was diagnosed with Lafora Disease, Becky is 20 years old and has been getting progressively worse since she was first diagnosed with JME at the age of 17. Becky’s first seizure was in August of 2007, though she had also begun to change since about 14 years of age. Her grades began to drop and her personality was changing. Becky also was very outgoing, loved family vacations in Maine and NH, canoeing, also cheerleading for her school and belonged to Mass. Maritime swim club. Those next years were so very hard, not knowing what was happening to our daughter. (we now believe she was having a lot of activity in her mind) because she would often complain that there was too much noise and she couldn’t concentrate and at some point around fifteen she had a lot of trouble waking up for school. It is very hard to know what you are seeing and it was put off as being clumsy, until the following summer when (the jerks) began to happen more frequently. We went to Children’s Hospital in Boston – her Neurologist became increasingly concerned, genetic testing was done as well as a skin biopsy.

Then we were told sadly, it was in fact Lafora. Even knowing the possibility that this could be the diagnosis, and the symptoms that we see in Becky a little more each day it was paralyzing to hear the words from her doctor. We will continue the fight to do what we can to help raise awareness of this horrific disease always knowing that Becky is surrounded by love, strength and hope from her family and friends.

 

 

Becky’s favorite saying is ’DREAM’ – and that is exactly what we are doing!

– Provided by Becky Cotton’s Parents

Matthew DeSimas

/by

Boston Massachusetts
(January 5, 1989-September 26, 2011)

South Coast Today, September 28, 2011

FAIRHAVEN — Matthew DeSimas, 22, of Fairhaven, MA, died on September 26, 2011 after a long and courageous battle with Lafora Disease. He was born in New Bedford on January 5, 1989, the son of Lisa Santos of Fairhaven and Steven DeSimas of New Bedford.

Matt grew up in Fairhaven and attended St. Joseph’s Elementary School, Hastings Middle School and Bishop Stang High School. He played for Fairhaven Little League and enjoyed roller hockey and golf. He was an avid outdoorsman who loved snow-boarding, skiing, hiking and mountain biking in New Hampshire. He loved his faithful pets; Ben and Jerry, Maxine and Fussy.

He enrolled in Bishop Stang High School and joined the football team. As the disease progressed and he was no longer able to play, the team rallied behind Matt and he became the team manager. He graduated from Stang in 2007 with the love and support from the students and faculty. In fact, Matt received his diploma bedside at Children’s Hospital with all the pomp and circumstance befitting a new grad.

Matt was diagnosed with Lafora Disease when he was just thirteen and for every day of the last nine years, he handled himself with courage and grace while this rare disease tragically cut short his life.

Matt is survived by his parents, step-father, Scott Santos, grandparents, Thomas and Aina Holden, Yvette DeSimas, and the late Herbert and Barbara Santos, Frederick DeSimas; as well as an aunt, uncles and cousins.

In keeping with Matthew’s memory, we ask you to share a smile and a story with someone today.

His Funeral Mass will be held on Friday, September 30, 2011 at 11am in St. Joseph’s Church, 74 Spring St., Fairhaven. Visiting hours on Thursday 4-8pm in the Waring-Sullivan Home of Memorial Tribute at Fairlawn, 180 Washington St., Fairhaven. Burial in River-Side Cemetery.

In lieu of flowers, donations in Matt’s memory may be made to Friends of the Hospital for Sick Children, Toronto, Inc., c/o Roha & Flaherty, 1725 I Street, N. W. Suite 300, Washington, DC 20006-2423, or donate online at www.networkforgood.org – the donation is for “Dr. Minassian’s Lafora research,” or to Bishop Stang High School, 500 Slocum Road, No Dartmouth, MA 02747. For online remembrances please visit: www.caringbridge.org/visit/matthewdesimas.

Biography

Matthew suffers from a form of Progressive Myoclonic Epilepsy known as Lafora Disease. He showed no signs of illness until his 1st seizure at age13. He was an honors student and athlete who enjoyed football, hiking, mountain biking and snow boarding. Due to Lafora’s rarity (around 200 cases worldwide) it took over 3 years and visits to Children’s Hospital in Boston, Dartmouth-Hitchcock Medical Center in New Hampshire and the Hospital for Sick Children in Toronto to get a definitive diagnosis. Unfortunately the diagnosis is not the one we wanted to here. Lafora Disease is characterized by progressively worsening seizures and cognitive decline. It is typically terminal within 10 years of onset.

We are now focusing on Matthew’s quality of life and raising funds for Lafora research. Due to the disease’s scarcity, there is little funding to find a cure. We’ve held several yard sales and the Ride for a Cure Motorcycle run to raise over $6,000 for this cause.

Although Matt continues his battle with Lafora Disease we have managed to fit in a number of highlights.

The Make-A-Wish people arranged for a tour of Fenway Park where we got to watch batting practice from the field and watch a Yankees – Red Sox game. Matt met and got a ball signed by Reggie Jackson.

We summited Mount Washington via the Cog Railway this summer. We toured the Niagara region of Canada and visited the Rock and Roll Hall of Fame in Cleveland. Matt’s goal has long been to attend Notre Dame University, so we took a trip to South Bend where he got a private tour.

Matt was elected Homecoming King and his classmates went out of their way to make it a very special weekend for him. In December, his classmates and the faculty held a variety night benefit fundraiser for Matthew. The whole Bishop Stang community has been wonderful to us throughout this whole ordeal.

– Provided by Matthew’s Parents

 

 

 

 

 

Caring Bridge: Matthew DeSimas
“Welcome to our CaringBridge site. It has been created to keep friends and family updated about Matthew’s battle with Lafora Disease. We’ve set this site up as the demands of his illness has kept us from keeping in touch as much as we should.”
http://www.caringbridge.org/visit/matthewdesimas

Parent Diaries

January, 2008
December, 2008
February, 2009
March, 2009
April, 2009
May, 2009
October, 2010
Summer, 2011
September, 2011

Mallorie Taylor Lindo

/by

Boston, Massachusetts
(October 3, 1995 – March 20, 2013)

Mallorie Taylor Lindo, 17, of North Washington Street, North Attleboro, died surrounded by her loving and devoted family at the Boston Medical Center on Wednesday evening, March 20, 2013 following a heroic effort over her illness.

Born in Fall River, Massachusetts on October 3, 1995, she was a daughter of David J. Lindo, Jr. of Fall River and Jennifer Shattuck of North Attleboro.

She was a resident of North Attleboro for the past 8 years having moved to the community from her native Fall River.

Mallorie attended Community School prior to the North Attleboro Middle and High Schools.

A soccer enthusiast since age four, Mallorie was a member of the Junior Varsity Girl’s Soccer Team at North Attleboro High School and the North Attleboro United Team. She was also a member of the North Attleboro High School Girl’s Track and Field Team.

Her favorite pastimes included listening to music, particularly Justin Beiber and texting her friends and family.

Mallorie attended Evangelical Covenant Church, Attleboro with her family.

In addition to her parents, she leaves her siblings: Donovan J. Lindo of North Attleboro and Molly A. and Kylie E. Lindo both of Newton; her maternal grandparents: Donald and Theresa (Havener) Shattuck of Pine Island, Florida; her paternal grandmother: Helena (Rebello) Lindo of Fall River; three uncles: Matt Armstrong in Illinois; Jared Shattuck of Atlanta, Georgia and Chad Michaels of Tallahassee, Florida; a cousin: Miles Shattuck of Atlanta, Georgia and numerous extended family members and dear friends.

Biography

Mallorie Lindo is a 16 year old girl living right outside of Boston Massachusetts and suffers from the rare form of epilepsy known simply as Lafora. Mallorie’s story is similar to others dealing with this atrocious disease. She was a normal, lively teenage girl whose life was drastically changed the day of her first seizure. Constant hospital visits, sporadic seizure activity, and hundreds of tests are now the norm. A once star soccer player and straight A student is slowly changing right before our eyes.

The type of Lafora that Mallorie has creates some questions amongst the Lafora experts. She possesses a rare genetic mutation that had never been mapped before and therefore created a sense of hope that perhaps there were answers hidden inside this small genome. Albeit a small sense of hope I think every parent dealing with Lafora’s can understand that any hope is worth holding onto. Unfortunately we have been told the rare defect will not help, but rather speed up the process. Another devastating blow.

When the official diagnosis came I had all the same questions every other person dealing with an affected loved one had… Why her? Why something this severe? Why not me? There are and never will be any answers. We can only enjoy one day at a time.

So we said screw it and started enjoying what we had. This summer Mal has been to Disney, Sea World, Epcot, and Universal Studios on behalf of Make-A-Wish. The local YMCA threw her a massive Sweet 16 party since she missed hers. She’s been to Maine to go canoeing, swimming, and cook spider dogs (hotdogs). We just recently made a trip to Patriots Spring Training to go cheer on her favorite football team and of course see some of the cute boys. What’s even more impressive is how everyone is coming together to show their support and love (golf tournaments, auctions, fundraisers, cards, meals, etc).

Through all the heartache and pains she continues to focus on ensuring that everyone finds JOY somewhere in life. Be it something simple like a phone call to an old friend or taking that trip you’ve been putting off for too long. Our lives are too short and if Mallorie’s disease can bring some kind of good to this world then she wins. She’ll beat it and we will all be healthier because of her.

As of today Mallorie has her ups and down. Some days are great and she is very aware of her surroundings. Other days are a struggle to say the least. We have found many cool little tricks that help her still be a strong willed teenager, but keep her safe as her body is slowly taking charge of her actions. It’s hard on everyone around her as well, but her younger brother Donovan has been amazing through it all and is always there to lend a hand. Unfortunately he is slowly losing his sister and it breaks my heart.

It’s times like these when you feel you are alone dealing with this atrocious disease, but families like Chelsea’s and those connected through Chelsea’s Hope are an amazing asset. I wish everyone dealing with their form of Lafora the best as my thoughts and well wishes are with each of you.

Jen Shattuck Cosentino – Mallorie’s mom

 

Golf for Epilepsy