Just4Children are raising money for physio, hydrotherapy and any specialist equipment and treatments Teddy needs to get the best outcome from his SDR surgery.
I am mum to three amazing children Teddy, Ruby and Ivy, and I would like to share our journey so far and why we are here asking for your support.
Teddy is aged 7 from Colchester. He was delivered at 34 weeks, weighing 4lbs. We spent just over two weeks in NICU before we could come home.
As time went on we knew things were not 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. After pushing for a referral to the hospital, at 18 months old an MRI confirmed spastic diplegic cerebral palsy (CP).
This is 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 being a first time mum but straight away I spent hours researching therapies and things I could do at home that could help our son.
Teddy has worked so hard since his diagnosis. It hasn’t always been easy, especially as Teddy has ADHD also so it can be very challenging to get him to do the ‘work’. He has had multiple treatments and therapies to help with his CP including 3 rounds of Botox, multiple physiotherapy and hydrotherapy blocks, which help for short term but not long term.
His CP still cause him many problems that make day to day life challenging for him. He not only struggles with the physical challenges but also the emotional ones too – not always being able to keep up with his friends or sisters and do what they do, especially with his huge love of football. Whilst Teddy can walk independently, the high muscle tone in his legs make walking difficult, tiring and painful.
We were informed about Selective Dorsal Rhizotomy (SDR) by his consultant who referred him to GOSH. 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 Teddy’s disability are offered this opportunity.
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, Teddy will require increased strength training in the lead up to the surgery, followed by 2 years of intensive post op therapy.
The NHS can only offer so much so Just4Children are hoping to raise the funds for everything he needs – private physio, hydrotherapy, equipment and anything else he requires in the 2 years of intensive post op therapy.
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 by giving him the best care. It will give Teddy the best possible results and give him the best quality of life and opportunities for his future and independence.
Thank you for taking the time to read Ted’s story and we would like to thank you in advance for your support on Teddy’s journey.
SDR surgery changes lives but we need your help!