levis wish to walk

Levi was born on the 22/01/2009 at 13 and a half weeks premature weighing 2lbs 2oz. Levi was born with a condition called Cerebral Palsy Spastic diplegia  We didn’t know he had cerebral palsy we found this out when he was 11 months old, We were told he would never walk or talk. Levi used a wheelchair for long distances and a kaye walker walking frame for indoor use. Fast forward to the year 2015…. Levi’s sister Keara had started to contact all the hospitals that were doing the SDR (Selective Dorsal Rhizotomy) surgery. This surgery would help him to walk…. Wait hold on this isn’t a given each child is different but we had hope. Liverpool’s Alder Hey Children’s hospital was the only hospital that stood out to us and the cost of the surgery was cheaper than the hospitals closer to us. We were given an appointment with Miss Pettorni the surgeon to discuss if Levi would be a good candidate for surgery. We were told to go away and to start fund raising for the surgery which was in the thousands, we now had a task of raising the funds. We came back to Alder Hey for further tests and to see if Levi would be a good candidate for surgery. We were sent home after 4 days of having a pump in Levi’s spine. We received a phone call to say that Levi was going to be having his surgery on the 14/08/2015 and that his name was put forward to have the operation funded by the NHS. We were over the moon; we didn’t even know Levi’s name was put forward so a double surprise. Levi had the surgery and it was a success it was so much more than walking as soon as he came out of surgery when he was fully awake he said he had a tingling feeling he meant he wanted to wee he had never felt this before surgery everything changed his writing was better, his posture was better he could even concentrate more and he wasn’t in so much pain as most of the spasticity had been removed. Once we got home the real work began and Levi had a long road ahead of him still to go. He worked hard every day to get strength and to build up his core. One day he said look everyone and out of his walker he walked on his own without any aides you can imagine the tears that flowed. Levi has to wear AFO’s (Ankle-Foot Orthosis) these are to support him to be able to walk they look like a cast. Over the years these have been hurting Levi more and more as he has had a few growth spurts which changes the way he stands and the way he walks and weight bears. We have had many talks with Levi and his team that look after him and decided to opt to have single-event multilevel surgery. SEMLS is a procedure on lower extremities like the hips, knees, ankles or feet. It’s called “single-event multilevel surgery” because multiple corrections for existing soft tissue and bone problems are done in one orthopaedic surgery. SEMLS usually results in fewer surgeries overall and just one phase of rehabilitation. SEMLS can be part of a treatment plan for conditions like cerebral palsy and spina bifida. For cerebral palsy, SEMLS is ideally performed after treatments to reduce muscle tone so that deformities don’t recur if your child has a growth spurt. SEMLS might help your child to: • Improve or preserve walking abilities. • Enhance mobility skills. • Decrease consumption of oxygen, which will help them tire less easily. • Preserve joint mobility. • Reduce risk of issues associated with misaligned muscles and bones. • Reduce risk of pain as they grow older. Levi will have another long road ahead of him 1-2 years of hard work from Levi to get him to a place free from pain and to be able to walk unhindered. We need to fund raise for this as the NHS only offer so many hours and from our experience previously with SDR we know that he will need a lot more so this is with a private physio and any other methods available to him i.e.: hydrotherapy, hippotherapy. Thank you for reading about Levi.