Just4Children are raising funds for Adam’s ongoing therapy needs so he could potentially stand unaided and express himself and feel freedom and joy, improving his quality of life.
Adam is aged 5 from Barnet. He was born with a very rare genetic muscular condition called CDK19. Our 6 year old smiley boy lives with many medical complexities that affect him in all aspects of his daily life. Adam suffers from constant involuntary movements and spasms throughout the day, severe intellectual disability, poor muscle tone and many behavioural issues.
However, this does not stop him from wanting to learn to move and play with his peers. This child of ours LOVES life. He is forever smiling and laughing.
Adam is unable to stand unaided, walk or transition from different positions. We are raising funds for Just4Children to provide essential therapies like DMI (Dynamic Movement Integration Therapy) which has worked wonders for Adam over the years. It has helped strengthen his core muscles that we believe has reduced his curvature of the spine which is mind blowing. This therapy alongside traditional Physio and OT will hopefully give Adam the freedom to walk and move with greater independence.
Our aim is to work on building his leg, arm and core strength so that he gains the skills to eventually be able to use a walking aid full time.
Adam would also benefit from equipment such as a vibration therapy plate, which can help with the spasticity in his legs which he currently has botox for. This is painful for him so vibration therapy helps children like Adam attain core stability, balance and improve muscle spasticity. Vibration plates alongside E-stim machines help relax the muscles by stimulating natural reflexes to move and also gives him much needed sensory input.
We have set this page up as unfortunately private therapies are incredibly expensive and our beloved NHS cannot support Adam fully in what he requires to thrive.
No one can tell us what the future holds for Adam, but as parents we will do everything we can to give him all the opportunities we can.
Thank you so much for your support and helping our amazing boy.