Hi, this is my son Felix. He is 5 years old and has an undiagnosed progressive neurological condition. Felix is unable to sit independently and is non-mobile. He has hypertonia, developmental delay, dystonia, hypermobility, epilepsy, dysarthria, cerebral visual impairment and damage within his brain. Nobody knows what is wrong with Felix and what causes his problems. All genetics have come back clear.
Felix was born past his due date and everything went well, we got the lovely home water birth we had planned. The problems started with 14 hours of crying every day. Felix couldn’t turn his head one way and feeding was very difficult. He slumped in every chair he sat in. Felix then missed every milestone and no one could explain why. We had MRI’s, lumbar punctures, muscle biopsies. We saw a pediatrician, neurologist, physio, OT, speech and language, dietician, geneticist, growth specialist and no one had a clue.
Felix doesn’t fit into any box. His MRI results show only he has a life-limiting condition. He has low tone in his trunk which means he needs constant support to be able to do all the things a 5-year-old wants to do. He has dystonia in his legs which makes it very difficult to bend and causes a lot of pain. Felix is such a happy little boy and tries so hard at everything he does. Felix is now beginning to question why he can’t walk and often asks for us to “make him better”. It’s heartbreaking as his parents.
He loves to play with his two sisters and our dog Scout. We are fundraising to help get him over to Canada where we have found a pioneering rehabilitation centre to help get Felix moving. It’s an incredible place with proven success stories.
We are desperate for Felix to have this intensive physiotherapy for 5 weeks and need to raise £10,000. A huge amount of money, we know, but we’re not giving up on him yet. We need to do this for Felix.
Felix and I will spend 5 weeks in Canada. Here Felix will have 4 hours intensive physiotherapy a day (we currently see the NHS physio once every month). He will then have 1.5 hours a day with a massage therapist. The therapy is tough but will teach Felix to use muscles he has never used before and in a consistent way. The therapist will work with Felix and we will continue the program at home until we can return.
Matt and I will be planning several fundraising activities over 2017. We will be starting with the Yorkshire Warrior and then the Tough Mudder.
For more info please see http://www.healthinmotionrehab.com
Having the right equipment and therapy for Felix means so much to the whole family. We are not giving up on Felix. He has so much more to give we just need to know how to give him the opportunity.
Follow Felix https://www.facebook.com/felixsfuture/