A fourteen year old boy with ALS is taking part in a research trial at King’s College Hospital that may improve the chances for people who have the condition, writes Rebecca Healy…
ALS – amyotrophic lateral sclerosis – is the most common type of Motor Neurone Disease. It leads to muscle weaknesses and gets worse over time. There is no cure for the disease but trials are taking place to gain a deeper understanding of the disease and potentially slow its growth.
Kyle Sieniawaski, from Pontypridd in Wales is believed to be the youngest person in the UK living with the disease. He is participating in the Fusion trial at King’s MND Care and Research centre.
The fusion trial is investigating whether a drug will help patients with a rare specific genetic form of ALS caused by mutations in a specific gene.
Kyle’s mother, Melanie Sieniawski, said: “Kyle was so happy to be given the chance to be part of this trial, and we’re keeping everything crossed that it helps him, and hopefully others living with ALS. Research is our biggest hope for the future.”
King’s MND Care and Research centre is the first specialist centre for MND. Dr James Bashford, honorary consultant neurologist at King’s, said: “We are incredibly grateful to Kyle and all our research participants who are supporting our work.
“We hope the results of this trial will lead us to an effective treatment for this devastating form of ALS, potentially helping people all over the world to manage their symptoms and maintain their independence for longer.”
