The Warner Brothers Wish to Walk
Our little soldiers, William and Arthur from Rothley in Leicestershire 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 but 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, my 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, being more common in premature or multiple births. With William and Arthur being twins, and born so early you could say the odds were pretty high!
This was such a confusing and anxious time. We really didn’t know what the future held, or how to manage it. They were still babies to us and secretly we were hoping that the professionals had made a mistake and one day they would just get up and walk. But, unfortunately this hasn’t been the case.
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.
In the early days of diagnosis we came across a procedure called Selective Dorsal Rhizotomy (SDR). This is a surgery that could potentially really 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 physiotherapy in place and lots of hard work to build up the leg muscles, this surgery could enable William and Arthur to stand up independently and possibly take their very first, long awaited steps.
Unfortunately, SDR is not available on the NHS. So we will need to find the funds should the boys qualify. We are waiting for an appointment with Great Ormond Street so the boys can be assessed to see if they meet the criteria for this operation. We are confident they should qualify but an assessment still needs to be done.
In the mean time we have teamed up with the charity “Just4Children” who we plan to fund raise through to pay for William and Arthur to have this life changing surgery. At last we feel like there’s hope!
If the UK can’t help us we have also been in touch with St Louis Children’s Hospital in Missouri USA. Here works a Dr Park who has over 27 years experience in this procedure and can take on more complex cases that cannot be done in the UK.
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 £50,000 – and we need this times two!
So if anyone would like to get involved in William and Arthurs journey, or have any fundraising ideas please don’t hesitate. It’s still early days, but we have a long way to go, to get both boys on their way to making their wish come true.