I decided to start this crowd funding task because i think the funds I am hoping to raise will make a difference to the quality of life of a very special 1.5 year old boy called Samuel who was born with a very rare Dravet syndrome, a form of epilepsy affecting 20-40 thousand births. Typically children with this illness have a very poor prognosis and a limited life span. The oldest person in the world with this condition is aged 32. Samuel was diagnosed with Dravet syndrome when he was a few weeks old - he was experiencing terrible seizures which among other things affect his breathing. Luckily they found a combination of medicines which bring his seizures under control but he suffered neurological damage which significantly delayed his development. What does it all have to do with me you might ask. Samuel and his family are my neighbours and i see and interact with him on a regular basis because the older kids in Samuel’s family are friends with my 5 year old. You will appreciate, that seeing a beautiful child with such a debilitating condition and a grim outlook, you want to do everything in your power to help his desperate parents who are not blessed with much wealth to improve his quality of life. Right now Samuel is still learning to hold his head and grab items such as toys. He cannot yet sit up, roll, or do any other simple mobility activities which you would expect a baby to master by 6-8 months. He has swallowing difficulties and has to take fluids through a tube. Samuel requires special physio, hydrophysio, special needs education, speech and language therapy, occupational therapy and equipment (bespoke mobility equipment) to ensure he continues to develop to achieve his parents’ dream for him. All this requires long term commitment and funding to make a difference to Samuel. NHS provides some support but it is very limited due to funding restrictions to make a difference. My personal dream for him is that thanks to the generocity of your hearts he can defy the odds and all doctors’ prognoses and live a long and fulfilling life. Let‘s help him get there together!

You can obtain further information about the condition on www.dravet.org.uk