Harleys Heroes Surgery Fundraiser

A little bit about Harley

Our little Harley-bobs is a funny, amazing and brave little boy with the biggest heart and an even bigger dermination. Harley has had a lifetime of struggle, which has never stopped him from doing exactly what he wants. He is a massive character with the most infectious laugh, he can brighten up a room and make everyone fall in love with him. Regardless of what his body can't do he is the happiest little boy. Everyone that knows Harley knows he has a rare genetic condition called CTNNB1 syndrome that causes spactisity in his legs, developmental delay and he is non-verbal. All of this causes a massive frustration for Harley but we have been given a lifeline to completely change this. And this is where we need you...

 

The Problems He Faces

Harley is a very determind little boy that has practically burst through his barriers and learnt to walk against all odds, he is however very unstable, falls alot and has alot of discomfort. He wears splints all day which he has learnt to reply on to give him a little more stability however this causes bruising, marking and blisters. Even with splints Harley walks on his tip toes caused by the tightness and spacticity in his calf muscles.

The spacticity and tightness is caused by the signals from the brain to his body, again this is a symptom of CTNNB1 syndrome. Harley has a strict physio programme including daily stretches, gaiters for long stretching, standing frame and walking frame.

Although all of this is in place to help him he is an adventurous little explorer that doesn't have time to stand still, even though his legs fail him.

 

Here Is What We Are Doing About It

We are currently in discussions with his consultant and have met with a surgeon that is keen to do SDR (Selective Dorsal Rhizotomy) surgery that will cut the nerves from the brain to the affected area, in Harleys case the lower legs. This will immediately
cut his spacticity and allow him to learn to walk a little bit more normal, flat footed and hopefully with a bit more stability. It has also been known that once this is done children have become more vocal and understand their toileting needs better (Harley is completely non-verbal and fully dependant for his toileting needs). Obviously we do not expect a miracle but if the surgery could give him more comfort whilst he is walking and give him a more normal flow when walking we could aim to have him running and playing along with his friends. Something that seems so impossible right now!

 

This surgery could quite literally change Harleys life, giving him more stability and independence.

 

The problem we have is that we have to fund the surgery ourselves as he doesn't fall into the catagory for NHS funding. The surgery cost is £10,000. We aim for the surgery to be in May/June 2022 however we are not able to book without the amount in full.

 

You Can Join Us

We are asking for help to raise £10,000!

We will be doing some active fund raising such as football matches, sky dives, 10k run and hopefully a fun day, ANYTHING AND EVERYTHING we can do to raise what we need!

 

Every sparing penny donated could help change Harleys life

 

We will be documenting our journey so please follow along with us, post and share using #HarleysHeroes

 

Thank you all for your love and support. Even if you can't donate please share the link and help us spread far and wide.