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

Shamoan Ahmed

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Shamoan Ahmed attends Chilwell School; he has a lot of blank spells lasting seconds. He has had a number of over night epileptic seizure maybe caused by tiredness. However, at the moment he is not on any anti epileptic medication he chooses not to go on it. Shamoan will be 14 years old in May 2009. Every morning I check my son is okay I thank my lucky stars and continue with my day with the hope he will continue to keep going as long as possible. Shamoan is on a low carbohydrate diet.

Shamoan loves football and playing on play station games, guitar hero world tour being his favorite at the moment. Shamoan’s friends are always around the house. As much as I am not keen on having youngsters around my home all the time, I think the day my son is not her I wont see any of them. I take every day as it comes and do my very best for him every day. I can accept for my children to be poor or homeless or even go without necessities in life it is so difficult for my children to know that they have the same medical condition as their sister. Worse still they saw her suffer and die. No child should have to see suffering and no child should have a ticking time bomb hanging over them. I only hope and pray that treatment and a cure is available one day for Lafora. My children have a death sentence for something they have not done. If research does not take place and treatment does not become available I will lose my other two valuable assets that I am trying to hold on to so desperately.

– Submitted by Shamoan’s mother, Shekeela Ahmed

Grant Pinder

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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.

Love,

Gareth and Clarabelle (Grant’s parents)

Amarah Ahmed

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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

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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