Charlies SDR Journey

 

 

 

 

 

Meet Charlie everyone!

 

 

 

 

Charlie was born 10 weeks premature weighing 3lb 2oz. At 13 months old he was diagnosed with Cerebral Palsy effecting all 4 limbs. This is more predominant in his legs. We were told by doctors he may not be able to feed himself, would not be able to walk and may have speech problems delayed with age appropriate development. He was given a grade of 1.5 of chances of being able to walk with an aid, 1 being unlikely and 5 likely. His core strength is weak which effects his balance.

Now at the age of 9 years old Charlie is your typical fun, happy, smiling boy, he loves football and gaming in his spare time. He is in main stream school and walking independently with a walking frame for short distances. He uses a wheelchair for longer distances because he becomes so tired fighting against the spasticity in his legs. He has undergone 10 surgeries on his legs and hips in this time and has proved so many people wrong with his capabilities and pushed himself to get to where he is today.

Even though Charlie has achieved so much in his development his main goal is that he may one day be able to walking independently or to be able to walk longer distances with his frame to increase his independence. We have visited Alder Hey Hospital to enquire about SDR. Charlie was offered a baclofen test dose which is put into the fluid around his spinal cord to temporarily remove spasticity to see if he was still able to weight bare and transfer. We were warned by physios they didn’t think this would be possible because he did not have enough strength and again he proved them wrong by walking across the hospital ward. He loved how his relaxed legs felt, no tightening no cramping and said he wanted to keep his legs like that forever.

 

We were finally given the decision that they think this surgery will benefit Charlie. We previously looked into this surgery when Charlie was around 6 years old but were declined because of weakness. Charlie again proved them wrong by completing a 1 mile fun run at Redcar in 50 minutes and raising £1700 for the Bradley Lowery Foundation. For his achievement he then received the Child of Courage award and even got the chance to be a team mascot at the Stadium of light and has now become a massive club supporter and is a season ticket holder. Surgery costs £16,000 and average after care physio strengthening around £20,000. Surgery will be carried out at Alder Hey Children’s Hospital.

Any funds raised that are no longer needed for Charlie would be given directly to The Bradley Lowery Foundation for them to carry on the amazing help, advice and support that they give to sick and disabled children.