Tatjana Gajic

Bosnia
(Passed in October, 2014)

 

Despite all of her suffering, caused by the cruel Lafora disease, she has a contagious spirit and a shining smile like lightening, that brightens life around her. Her large dark glowing eyes, full of gratitude for everyone nearby, shine great love and tenderness.

 

 

Tatjana was a healthy, good, noble girl. She was an excellent student, and liked to read so much that a new book would make her happier than a new dress. As a little girl she wanted to take ballet lessons, so she did. And later she wanted to dance and was delighted with every performance. She played tennis and skied so well that she was even advised to participate in competitions. She wanted to become a pediatrician someday so she could help other children…

One day, during the second half of her first year in high school, I got a phone call from her school: “Please come, Tatjana is not feeling well.” Surprised, and for a moment lost, I asked myself if I had understood. We were afraid to get a call from Milana’s school because she already had some problems, Tatjana was a healthy child, what cruel destiny was it? Unfortunately, we found out that she also had some kind of clonic seizures. Diagnostic procedures followed – MR and CT of the brain were all right, EEG showed a certain slow motion and changes, which should point to therapy.

Tatjana went back to school activities, but soon a second seizure followed. We left with both girls for a consulting check up to the Neurological Institute for children and youth in Belgrade. Professor Jovic and his associates got suspicious and ordered some gene tests, the diagnosis: MORBUS LAFORA (NHLRC1, EPM2B). DESPAIR, SADNESS, DISBELIEF. There are no neurological diseases in both of our families, but here we are dealing with the cruelest genetic lottery sequence of gene mutations from both parents. Only later, on the Internet we found a commentary of a parent: “OUR CHILDREN ARE SENTENCED TO DEATH, WITHOUT OUR GUILT.”

During these days in Belgrade we were hiding the cruel truth from the two of them, but they felt that there was something awful going on. I remember when Taca, during a walk, suddenly sat on the walkway and started to cry. She showed me a message she received from her schoolmate, a message of shining support and kindness. Her schoolmate wished that Tatjana would come back to school as soon as possible. I will never forget what her friends, during their first visit after we came back to Banjaluka, said: “Mrs. Snjezo, how could this happen to Tatjana, she is the best of all of us.” Only a child can say something like that and be so sincere, warm and noble. Even today, this kindness means a lot to Taca.

Unfortunately, Tatjana was headlong “decaying”, she didn’t reconcile with her destiny, refused food and, despite all efforts, she rapidly lost weight, and her immune system started to fail. During that winter she suddenly lost her favorite aunt who had been a great support to her. As a doctor, I am convinced that this additional stress gave her pneumonia a few days later. Three long months of agony started, a fight for her life, atelectazis, tracheotomy, secondary intra hospital infections… Taca, anyway, managed to win this battle. After leaving hospital, she never got back on her feet again, but has strength in every way, and hope for life returned. Right now unsolvable problems are often and painful colic because of frequent urination of kidney sand and stones.

There are days without pain, days when she’s happy for every move she makes while exercising. But, there are also days when she strongly wants to say something, participate in conversation, but saying even one word is hard, or even impossible. Those are perhaps the hardest moments and those tears hurt the most. Often she complains to her sister while she’s sitting next to her bed trying to read to her or to recount some of their old stories. Milana is often kicking us out of the room and whispering something on Tatjana’s ear. Sometimes, this whisper is loud enough for us to hear: “Come on, sis, give it a try, get out of this bed, do you know how much I miss you?” They teach us what patience and unconditional love are. Many friends have disappeared, phones got quiet, most of the time they are focused on each other. That’s not only our story; unfortunately, this is the destiny of almost every story of this kind. There are many reasons: discomfort, disbelief and fear of disturbance… The truth is that it’s very difficult to be friends with someone who has lost a big part of himself or herself. But, believe us, a great part is still there and it is going to remain there for a long time. You should not judge a book by its covers, you have to gain strength and give it a try… They need friends, relatives, neighbors to fight in this hard battle, but we are not saying this as a criticism, but as an encouragement…

Hope and a will to live have returned to Taca and for sure she has a lot of resources not easy to be destroyed. Every day we are feeding her hope, which she surely needs as much as food itself. This hope is being transferred to her through stories of how Professor Jovic, Professor Minassian, Professor Escueta… are going to make “vitamins” which will strengthen her muscles so she will be able to swim again, all the way to the buoys. These great enthusiasts are working hard and they are convinced to be on the best way to reach a solution.

WITH ANY KIND OF INVOLVEMENT IN OUR FIGHT, YOU ARE HELPING US TO BUY TIME – THE ONLY DISPUTE THING

– Provided by Tatjana Gajic’s Family

“We are the Gajic family from Banja Luka in Bosnia and Hercegovina. Our two girls, Tatjana and Milana are suffering from the Lafora disease.”

Read more about the family on their website:Let Us Beat Lafora

http://www.lafora-tacamiki.com/indexen.html

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Sonam Ahmed

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

(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

Becky’s Dream Website

Becky’s Dream

Matthew DeSimas

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