Super Stan’s Therapy

Just4Children want to raise funds for Stan. Due to his genetic condition he is yet to stand or take his first steps and needs specialist therapy and home adaptions to help him fulfil his potential.

£787
Total raised
5.25%
£15,000.00
Target
Donate Fundraise

20 donations

Just4Children want to raise funds for Stan. Due to his genetic condition he is yet to stand or take his first steps and needs specialist therapy and home adaptions to help him fulfil his potential.

Stan is a super smiley soon to be 4 years old little boy from Marlborough in Wiltshire. He was born with club feet and after a year of plaster, splinting and surgery’s we thought we had seen the last of the hospital. How wrong we were!

We noticed Stan didn’t meet milestones as quickly as others if at all. He struggled to eat, was sick and couldn’t sit up himself. Then covid struck and we were advised to shield just as we were starting therapy.

He is just recovering from another surgery and is on the waiting list for a gastronomy. Fast forward 2 years and we now have a genetic diagnosis of MAPK8IP3 de novo deletion exons 1-8. This is really rare, Stan was number 16 in the world. Luckily, we get to chat to the other families which has been a lifeline and given us hope for the first time.

We have paid ourselves for private SALT sessions and have now found a physio willing to support Stanley. The only downside is it’s 130 mile round trip. We are racking up approx 15,000 miles in appointments and surgery’s every 6 months.

We also have to adapt our home for Stan’s quality of life and to save my back! He needs a bedroom which is wheelchair friendly and a safe space to wash and bathe. All of these things have a huge cost which have continued to rise.

I’m so sad that the NHS is stretched to breaking point. Whilst Stan has a great team of therapists once every 6 months is not enough. In the 18 months we have funded SALT sessions he went from non verbal to 150 words and is starting 2-3 word joining. In his physio session he was able to climb 4 stairs with support again never achieved before.

Stan starts school in 10 months. We want to give him every opportunity to be independent and working towards walking in this time. He desperately wants to run with his sisters and his cousins and we hope by creating this page we can continue to help him fulfil his potential.

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