Campaign by Story
Meet Aidan, our amazing little boy who was recently diagnosed with a rare neurodegenerative disease called SPG4. This happened due to a mutation on the SPAST gene. This disease is a type of hereditary spastic paraplegia (HSP) which causes progressive muscle stiffness and weakness in the legs. When it presents in children it can be more complex, causing tightness in the arms and difficulty with speech and swallow.
Aidan is the only child to currently be documented with having his specific SPAST mutation so the road ahead for us is unknown. It may be a progressive disease but Aidan is still a young child with a lot of skills and development to gain. It’s our jobs as his parents to help him reach his potential and currently he gets one hour of monthly physiotherapy through the NHS which is not enough.
Aidan’s high muscle tone makes it difficult for him to move the way he wants to. His body can feel stiff and tight due the spasticity which means simple movements take a huge amount of effort and can even be painful. Despite this, Aidan works so hard and is gaining strength each day.
These funds would help Aidan receive additional physiotherapy, occupational therapy, speech therapy, intensives therapy blocks, DMI, CME, swimming blocks and other specialist equipment he may need as he grows. The therapies and equipment are very expensive and unrealistic for families to be able to consistently afford. This is why we are asking for all the help we can get to give Aidan the best start to life.
Our goal is simple but life changing — to help Aidan gain independence. We want to give him the very best chance to explore the world on his own.
As we continue with Aidan’s journey, we will be taking part in fundraising events to help boost this page and get him every opportunity he deserves. Every donation, big or small is appreciated.
Thank you so much for reading Aidan’s story and for supporting our family’s journey. Your kindness, encouragement, and generosity mean the world to us.
Katherine and John
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