Alex’s Wish to Walk
Alex is a 3 year old from Leigh, Lancashire. He has Spastic Diplegia Cerebral Palsy and Just4Children need to raise essential funds for his post SDR operative care and therapy to enable Alex to fulfil his wish to walk independently.
Alex is a determined, bright and funny 3 year-old. He was born by emergency c-section at 28 weeks and spent the first 2 months of his life in NICU in a critical condition, attached to machines to help him breathe, fed by a feeding tube and in a sterile medical environment where every step forward inevitably led to two steps backward including setbacks caused by infection and chronic lung disease.
Throughout this time Alex truly taught us what it means to have a fighting spirit!
When Alex came home we believed everything would be fine from then on and we started to put the trauma of his start in life behind us.
However, months later we noticed that Alex wasn’t able to sit up on his own, rollover or crawl and his legs seemed to feel tight. We discussed this with his doctors and just a few weeks before Alex’s 1st birthday, a visit to the paediatrician turned our lives upside down. He ordered an MRI scan and Alex was diagnosed as having Cerebral Palsy. The MRI showed that he had brain damage and we were told that this would seriously impact on Alex’s life and that he may never walk or lead an independent life. As a parent nothing can prepare you for such news.
Alex now has to wear AFO splints and a lycra body suit every day to function as well as he does, and have regular physiotherapy and botox injections. This is a world away from the life we expected for our 3 year old little boy.
Alex has made amazing progress through his hard work and determination but the spasticity in his legs means he cannot stand on his own, walk without a walking frame or climb stairs and has pain which is managed using daily medication.
Although his condition does not get worse the physical impacts over time do. Premature aging of the muscular-skeletal system can lead to the body being unable to do what it once could at a young age and also lead to a high degree of associated pain. Our fear is that although as a child Alex is making great progress, over time he may well find himself confined to a wheelchair, living with pain and with limited independence.
There isn’t a cure for Cerebral Palsy, but there is a life changing surgery called Selective Dorsal Rhizotomy (SDR) which Alex has been accepted for and will be having in October 2019 at Alder Hey Hospital. SDR is the ony surgical procedure that will permanently reduce or eliminate the tightness that causes Alex to struggle on a daily basis. The operation is the best possible chance for Alex’s independence and pain free future.
The SDR operation is itself is funded by the NHS but the operation is only the beginning of a very long journey where intensive physiotherapy is needed to ensure Alex is able to benefit from this surgery.
We need to fundraise £15,000 to enable us to pay for the post-operative therapies and equipment that Alex will need after surgery.
Alex is such a fighter and has a truly amazing personality and makes every person who meets him smile. Our wish is for Alex is to see him have as much independence as possible and be able to live the life he deserves.
Please help us to make Alex’s Wish to walk come true.