GoFELIX
Message from felix’s parents
Felix is a very happy and cheeky 22 month 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 3 months having the diagnosis that our baby boy would never walk, talk and most children with this condition won’t see past infancy. In spite of this Felix continues to surprise his medical team and us. 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 so that one day he may be able to roll over, hold a toy and even sit on his own. With the help of the NHS he is responding extremely well and always progressing but unfortunately the amount of time the therapists are able to give him just isn’t enough to meet his needs so we are raising funds for Tree of Hope to give him the best possible therapy and specialist equipment.
So this is Christmas. Mistletoe, Christmas trees, Santa sprinting…Yes that’s right Santa sprinting.
In the first of the 3 Grand Prix held by Cardiff Metropolitan University, The Christmas Classic, open to all U20 and senior athletes around the UK and Europe, showcases some of the best non-elite athletic talent in South Wales whilst raising money for a Cardiff based charity fund.
Welsh sprinter Christian Malcolm told us, “It’s a brilliant day out. I often would take time off a busy week of training just so I could experience the atmosphere and fun they have down there”.
But the showcase of Welsh athletics isn’t even the best part. At the end of the day there is a sponsored santa run where all the proceeds go to Go Felix.
Matt Elias head of sprinting explained, “It’s a great cause. Seeing people try and run flat out in A Santa Claus suit is pure comedy.”
Here is the world record set in 2012
[youtube]https://www.youtube.com/watch?v=6gt8s8bESEs[/youtube]
GoFELIX
Message from felix’s parents
Felix is a very happy and cheeky 22 month 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 3 months having the diagnosis that our baby boy would never walk, talk and most children with this condition won’t see past infancy. In spite of this Felix continues to surprise his medical team and us. 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 so that one day he may be able to roll over, hold a toy and even sit on his own. With the help of the NHS he is responding extremely well and always progressing but unfortunately the amount of time the therapists are able to give him just isn’t enough to meet his needs so we are raising funds for Tree of Hope to give him the best possible therapy and specialist equipment.