Grant Pinder

July 3, 1985

Grant was what we were waiting for, a son. I lost my first baby which was a boy, so he was even more special to us. He was a child that loved to go outside, from the time he was born. As he grew nothing much changed. Every Saturday we always took our family in the boat. Grant’s favorite thing to do was to go diving. He loved fishing too, but diving was his favorite. Grant found a job doing what he loved, diving and catching fish.  He went fishing for a few years but started to go down health wise, and he wasn’t able to keep that job. He started having jerks and dropping things in the morning when he was 17 years old. He lost a few more jobs because he was getting slower and slower in his movements.  A few days before he turned 18, he started vomiting continuously. We took him to the doctor here in the Bahamas who sent us to Florida where he was misdiagnosed with Juvenile Myoclonic Epilepsy, which was understandable be cause symptoms present the same as Lafora.

Grant was started on Depakote and for the first few months was alright; then he worsened. The doctor increased the Depakote dosage which worked for an additional few months until he worsened again. New medications were added and when Grant took a turn for the worse he would take him off of one and add another. Trying to find the right medication combination is a big challenge.
Grant started dating Georgette, who is a beautiful woman inside and out, in 2005 right before his Grandmother died. They married on July 29th, 2006. Georgette has stuck by him through all of the good and bad times. There have been a lot of bad times.

When Grant and Georgette had been married about 3 years he became worse and worse, until we took him to Florida again where he was diagnosed with Lafora Disease. Grant is now 30 years old and we have been dealing with this horrible disease for 12 years. His cognition has slowed down a lot and he does not understand that he cannot do what he used to do. He thinks he can still drive and dive. We have hard times explaining that to him.
My oldest daughter, Claire, started showing the same kind of symptoms and has been diagnosed with having the Lafora gene on one chromosome. Her cognition is slow like Grant’s and she is on three of the same medications. The good thing with her is that she doesn’t fall as much as Grant.

 It seems most of kids that have Lafora disease don’t live to 25 years of age. We are thankful that Grant has made it to 30 years old. We feel privileged, to have had him for so long. We are very thankful.

We understand that the doctors are close to a therapy for Lafora Disease so PLEASE DONATE TO CHELSEA’S HOPE SO A THERAPY FOR THIS DISEASE CAN BECOME AVAILABLE SOON.


Gareth and Clarabelle (Grant’s parents)

Amarah Ahmed

Vibrant Amarah Ahmed is so loud I can hear her from the other side of the house. Amarah attends Round hill Primary School. She used to attend Beeston Rylands Junior School she had to move school due to the house move. Both schools have been made aware of Amarah’s medical condition. Amarah now 10 years old, she skips and jumps and eats all day. Amarah is just full of life and is a happy go lucky child. Actually she is very caring loving and still mummy’s baby as she has her own bedroom but still sleeps in mum’s bed. Amarah has already had two epileptic seizures over 2 years. Amarah is so desperate for a life she wants to be a nurse when she grows up. If she could have life that would be fantastic, a career would be a bonus. This mother desperately wants to see these children have a life. I just wish some miracle would happen that I would wake up one day and be told that there would be a cure for lafora.

The Ahmed children attend the Queens Medical centre Hospital in Nottingham. The children’s consultant is called Dr. William Whitehouse he is a paediatric neurologist, consultant. He also teaches at the medical school. Dr. Whitehouse is quite an expert in his field well known and respected by other professionals. Dr. Whitehouse has good people skills. Unfortunately even the best neurologist couldn’t save my daughters life. All my children want is a life, we can only give the children a life if research takes place and a cure or treatment is found. At the moment there is nothing that can help my children.






– Submitted by Amarah’s mother, Shekeela Ahmed

Adela Richer

18, Texas

Eighteen years ago when our daughter came into this world she brought with her a joyful universe. Since that blessed day we have been gravitating in this universe enjoying every minute in it, amazed at this miracle that was given to us, this wonder that was changing every day, growing, adding layers of knowledge, wit, and beauty in every aspect. We used to say to each other that Adela was the only thing that we did to perfection. Of course all parents believe the same, but indeed she was perfect to us!

She was a model student in school, she enjoyed reading, learning, being curious about all the things around her. By the third grade she was accepted in the Talented And Gifted program for all study subjects. In the fifth grade she started playing violin. Outside school she went to gymnastics, ice skating, and tennis classes, and enjoyed water skiing, bicycling, or roller skating in the weekends. She was a daring spirit always willing to try new things.

Then seven years ago when her fist seizures happened some stars in our universe became cold. As painful as it was we didn’t despair right away as we read that for most people the seizures can be controlled and they live an almost normal life despite certain limitations. But Adela is not like most of the people with epilepsy. On the contrary, she is among the very few people in this world who was destined to an extraordinary cruel disease named Lafora.

She was diagnosed with Lafora in June 2007, after six years of seizures and a long and painful trip through a large panel of antiepileptic drugs in an attempt to control what the doctors called “idiopathic epilepsy”. During all this time we saw her wit, happiness, and exuberance slowly fading away. Initially we blamed her physical and cognitive regress on the side effects of the antiepileptic drugs. As the years passed her sharp mind that we were so proud of entered a dark zone. Things that were so easily done before became painfully hard. She had to stop playing the violin, and all the other activities she enjoyed. Friends disappeared. While kids of her age open the door and step into the real world, Adela’s world closes around her confining her to her room. While other kids become independent Adela is relying more and more on other people.

She recently turned 18 and she is looking forward to starting her adult life unaware of how sick she is. We do not have the courage or the heart to tell her the real diagnosis and the dismal prospects of the disease. She is a high school senior, she goes to school for 4 hours each day with all the accommodation offered by special ed program. Some days though, she is too tired to attend classes and she spends her time reading or watching TV. She can still talk coherently (sometimes with breaks between words), she understands her reading, but the smallest amount of homework can tire her to exhaustion and gives her lots of myoclonic seizures that she calls socks. She stumbles a lot, has “drop attacks” and losses muscular tonus in her arms making eating, drinking and writing very frustrating.

For the rest, each of the stories written here is our story and there are no words to convey the cruelty of this situation. What we held dearest to our life, the light and soul of our existence is melting away each day.

– Provided by Gabriela & Edmond Richer

Parent Diaries


Abdul Ali

24, United Kingdom

Abdul was born in Bangladesh in 1984 and we came to the UK in 1988. Everything was going fine. We have lived and continue to live in the East End of London. He went to the same secondary school where my youngest brother now goes as well as the local six form college (then it did not have a separate six form as all students mixed).

He had a couple of unexplained seizures in about 2002 or so and eventually he became an inpatient at the Royal London Hospital. He also lost his place at the college as the staff felt he could not come back that year as he had missed too much work but he was guaranteed a place the next year which he could not take. I would just like to point that we are not in anyway critical of the college as they have been wonderful and understanding.

The doctors at the hospital put him on anti epileptic medication. The seizures got worse and worse and we realised that he was developing other problems like he could not hold a pen properly.

Eventually after a number of tests and a minor operation they diagnosed Lafora. By that time eventually the things were getting so serious that he was on life support and they gave him six months before death.

We asked that he come home to spend his final days here.. Those days have become years. He has regained some of his abilities for example sometimes he can stand up without falling or that he can talk about things sometime as well as do things like watch TV. He is a fussy eater.

He even at his best moments is like a child who cannot do anything on his own but there are times when he is more lucid then other times.

We have had wonderful support from the hospital but it takes time for the local authority or our landlord take make adjustments to the house and they are only making them now.

It takes the life out of people who suffer from it at the peak of their life.

– Submitted by Ali’s Brother