Tal's Story
Taliesin is a happy, intelligent 5 year old boy from Cardiff. He was diagnosed with Cerebral palsy at the age of 1 year, after many months of concerns that something just wasn't right. He was delayed in many of his milestones such as sitting and rolling and would struggle with more basic things like feeding. Soon after diagnosis Tal was referred to the Wales Bobath centre and at 20 months he received his first therapy block. As parents we learned valuable information about cerebral palsy and how it specifically affected Taliesin. The Bobath therapists explained he had a type of cerebral palsy known as cerebral diplegia. They suspected he would never run, never go up/down stairs independently and would always need a wheelchair for long distances and (at best) sticks for short distances. It was at Bobath that Taliesin learned how to crawl for the first time.
We heard about Selective Dorsal Rhizotomy in 2010 and spent around a year researching this option, both in medical journals and in discussions with health care professionals. We were getting more concerned about Taliesin's discomfort levels with. At night he would frequently wake in the crying due to muscle spasms. The tightness in the muscles in his legs made toilet training and dressing Tal extremely difficult also. The consultants we spoke to informed us they expected Taliesin would need multilevel orthopaedic joint surgery due to the contracture development over time. So in summary, the overwhelming response in our case was that Taliesin would be an excellent candidate for the surgery. We were told that in the UK in 2012 Tal couldn't be offered surgery until he was 6 years old and if it was offered it would be via a large open procedure. We researched things further and decided along with Tals health care professionals that the best option was to arrange for him to have a selective dorsal rhizotomy via limited laminectomy (keyhole surgery). We applied to St. Louis raised £40,000 and Tal had SDR on 11th June 2011 aged 3.
So much has happened big and small since the surgery. Tal is in mainstream school up and about using single foot sticks, making friends and joining in with everything he can. Its amazing to think that before surgery we had no idea how he would progress and believed we may never get Tal potty trained let alone have him be practically able to sort himself out independently. He could not walk or stand without a frame before the operation but he can now stand for 60seconds and take 20 independent steps. He never stops (talking and moving) and now even goes to mainstream swimming lessons and joins in with the occasional Saturday morning rugby session! One of the major factors influencing all this has been his increase in confidence. (Claire, Tal's mum and trustee of the charity)
You can read more about Tal HERE.
We heard about Selective Dorsal Rhizotomy in 2010 and spent around a year researching this option, both in medical journals and in discussions with health care professionals. We were getting more concerned about Taliesin's discomfort levels with. At night he would frequently wake in the crying due to muscle spasms. The tightness in the muscles in his legs made toilet training and dressing Tal extremely difficult also. The consultants we spoke to informed us they expected Taliesin would need multilevel orthopaedic joint surgery due to the contracture development over time. So in summary, the overwhelming response in our case was that Taliesin would be an excellent candidate for the surgery. We were told that in the UK in 2012 Tal couldn't be offered surgery until he was 6 years old and if it was offered it would be via a large open procedure. We researched things further and decided along with Tals health care professionals that the best option was to arrange for him to have a selective dorsal rhizotomy via limited laminectomy (keyhole surgery). We applied to St. Louis raised £40,000 and Tal had SDR on 11th June 2011 aged 3.
So much has happened big and small since the surgery. Tal is in mainstream school up and about using single foot sticks, making friends and joining in with everything he can. Its amazing to think that before surgery we had no idea how he would progress and believed we may never get Tal potty trained let alone have him be practically able to sort himself out independently. He could not walk or stand without a frame before the operation but he can now stand for 60seconds and take 20 independent steps. He never stops (talking and moving) and now even goes to mainstream swimming lessons and joins in with the occasional Saturday morning rugby session! One of the major factors influencing all this has been his increase in confidence. (Claire, Tal's mum and trustee of the charity)
You can read more about Tal HERE.
