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Our little soldiers, William & Arthur were born on 10th Sept 2012 at just 28 weeks and 6 days.
After nearly 8 weeks in the special care baby unit, they were finally able to come home and we could resume family life with our lovely new twin boys.
They progressed well considering they were born so early and we knew that there could be a slight delay in them reaching their milestones because of their prematurity . However around the time of their 1st birthday in September they were still unable to sit up, crawl or pull up to stand. We were starting to get concerned. We took them back to see their consultant who wasn't overly worried, as they still had time to catch up. However I knew something wasn't right, they just didn't move in the same way as other children their age. I started to google and worried myself sick ! After another appointment with the consultant, he was finally starting to agree with us, and arranged for the boys to see a physiotherapist .
We then had to wait a further 2 months to see the physio, during which time I had just about googled every possible explanation, but everything was pointing to one thing, and in May 2014, when the boys were 20 months old, our worst fears were confirmed !
Both our lovely boys were diagnosed with Spastic Diplegia, a form of Cerebral Palsy! And even though I was half expecting it, it was just heartbreaking to hear.
It is estimated that 1 in 400 babies born in the UK have a form of cerebral Palsy. It being more common in premature or multiple births. With William & Arthur being Twins, and born so early you could say the odds were pretty high !
Spastic Diplegia is a condition that means there has been a complication in the brain, to the nerves, to the muscles in the legs. The boys leg muscles and feet suffer from very high muscle tone, making it very difficult and uncomfortable for them to learn to walk normally like other children.
But there was hope ! Selective Dorsal Rhizotomy (SDR) is a surgery that could potentially benefit William and Arthur. The damaged nerves in the spine causing the spasticity are cut, freeing the legs and feet of the high tone causing stiffness.
After the operation, with the right physio in place and lots of hard work to build up the leg muscles, this surgery could enable William & Arthur to stand up independently and possibly take their very first, long awaited steps.
Unfortunately SDR is not available on the NHS. So we have been raising the funds ourselves . We have chosen The Portland Hospital in London to treat the boys, and are thrilled that William has now been able to have his operation back in January and Arthur is due this month !! We have teamed up with the charity "Just4Children" who we have been raising money through to pay for William & Arthur to have this life changing surgery and treatment.
The average amount needed for one child to have SDR surgery in the UK , and with on going physiotherapy throughout their childhood , plus equipment is around £50,000 . and we needed this times two ! however because of the incredible support and generosity we have gone over our target and are now heading towards £150,000 !! To reach this amount would mean that William and Arthurs childhood treatment and physiotherapy would be completely covered and we can all offer them the best possible chance of them getting on their feet.
Thank you Xxx
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