Felix is a very happy and cheeky 9yr old with a very rare genetic brain disorder called Lissencephaly and Miller-Dieker Syndrome. Lissencepahly literally translates to ‘smooth brain’ meaning that during pregnancy his brain didn't fully develop the full six layers a normal functioning brain has, but instead has only four. This condition impacts in ways many of us take for granted, like swallowing food for example or even holding up your own head.
We(mum and dad) had almost 48 hours of normality with our newborn before being told that there was something wrong and then at three months having the diagnosis that our baby boy would never walk, talk, will have seizures and most children with this condition won’t see past infancy. He has daily life threatening seizures, suction machine and needs oxygen. Despite all of this Felix continues to surprise his medical team and us. The fact that he is nearly 7yrs old is truly a miracle and we are thankful for every day we have with him. His smiles and cheeky grins leave an impression on everyone who meets him.
In order for Felix to make as much progress as possible, we work closely with the NHS and a network of therapists to try to build his strength and to keep him as healthy as possible. Felix is responding so well with the therapies he receives and we really believe this is one of the biggest contributors to maintaining his health. He’s also getting very big and with his seizures we are in the process of needing to adapt our house to help us get him around, be included in all family rooms and to be able to see him at all times and also to be able to access the garden freely. With the help of the NHS he is responding extremely well but unfortunately the amount of time the therapists are able to give him just isn’t enough to meet his needs and even though the council are great they too are unable to meet all his mobility and inclusion needs. So we are raising funds for adaptations, the best possible therapy and specialist equipment.
Thank you for supporting and helping us raise funds for our truly miraculous little boy!