Just4Children are fundraising to support Haydn to receive specialist therapies and treatments to give him the best quality of life. Haydn is almost 7 from Reading.
I am Mum to two amazing children Jessica and Haydn, and I’d like to share our journey so far and why we’re here asking for your support.
Haydn was delivered at 26 weeks, a little over 3 months early, weighing just 1lb 10oz (750g). Despite being incredibly small and having many medical interventions, such a ventilator breathing for him, he was initially doing well but after a few days he developed one problem after another which put him in an incredibly vulnerable situation. We were then given the awful news that Haydn had suffered a bleed on the brain. We had so many questions about what that meant for our son and his future, but they just couldn’t give us any clear answers so early on. Haydn spent a very long 106 days in hospital. During this time, he was diagnosed with respiratory distress syndrome, chronic lung disease, PDA and suspected sepsis, to name just a few.
As time went on, we knew things weren’t quite as they should be with his development. He wasn’t meeting his milestones of being able to sit unaided, crawl or bare weight in his legs. At around the age of 2 years, an MRI confirmed spastic diplegic cerebral palsy (CP) – a developmental disorder caused by the damage to his brain, which affects the body’s ability to move and maintain balance and posture. Understandably this was incredibly hard news to receive but straight away I spent hours researching therapies and things I could do at home that could help our son.
Quite early on we were informed about an operation called Selective Dorsal Rhizotomy (SDR). At the time he was too young to be reviewed, however he has recently been through various assessments and a specialised team of individuals all agreed that he would make a suitable candidate for the operation and this would be funded by the NHS. We are very lucky as not every child with Haydn’s disability are offered this opportunity.
Haydn has worked hard to get to where he is today (hasn’t always been easy), but the CP does still cause him many problems that make day to day life challenging for him. He struggles with the physical challenges but also the emotional ones too – not always being able to keep up with his friends or sister and do what they do. Whilst Haydn can walk independently, the high muscle tone in his legs make walking difficult and tiring. The operation itself is on the lower spinal cord, where they cut the damaged nerve fibres that cause the high muscle tone. The goal of SDR is to relax the muscles by identifying and cutting only those nerve fibres that contribute to the spasticity (muscle stiffness).
The operation is just the start and is by no means a miracle cure. To gain the most from the surgery, Haydn will require increased strength training in the lead up to the surgery, followed by 2 years of intensive post op therapy. I currently provide home physio twice a day (every day), he attends horse riding with the RDA, has a weekly private PT session, Osteopath and ad hoc private physio sessions but as with everything, it all comes at a cost. There are many more options out there, both therapy based as well as equipment that would benefit Haydn at this pivotal time. This operation has the potential to be life changing for our son and we want to ensure that it is, by supporting him in the very best way we can. This will give Haydn the best possible results and opportunity for his future and independence. We really need your help to achieve this.
Thank you for taking the time to read our story and we look forward to sharing updates along the way.
Emma, Rob, Jessica and of course, Haydn
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