Evie and her twin Lucy were born prematurely at 33 weeks. By the age of 2, after missing certain milestones, she was diagnosed with cerebral palsy spastic diplegia. This is brain damage (from her delivery) which causes her legs to be stiff, making walking awkward and difficult. Her legs pull in and she walks with a scissor-like gait, up on her toes. She cannot walk long distances without a lot of discomfort and finds simple things like standing, sitting without support, pulling her socks on and tying her shoelaces, very difficult. She trips often and needs to be careful on stairs as she has very poor balance. She can’t wear wellies or flip flops and watching her face when her twin sister was being fitted for normal, little girl shoes, while she had to wear stiff solid boots, was heart breaking. She always asked me if she could have ‘pretty shoes’. On her prom day she sobbed and did not want to go because she said that everybody would look at her and think she was a freak. She cried that she hated her legs so much. It was devastating. Socially, her condition has made her very shy and self-conscious.
It has been very tough for her and us as a family, especially as she has watched her twin enjoy a normal life with dancing and gymnastics. She has had to wear splints, night braces, had her legs put in casts for weeks, had botox many times and has a lot of physiotherapy, just in order to keep the stiffness from getting worse.
Evie is now 18 and we have spent many months researching a life changing operation called Selective Dorsal Rhizotomy (SDR) surgery. This is done regularly in the USA but has only been offered in the UK for around 10 years and it is still only offered to a very select group of children. The operation does not cure cerebral palsy but removes muscle spasticity (stiffness) by cutting the nerve rootlets in the spinal cord that are sending abnormal signals to the muscles. It is a risky operation but the results can be, quite simply, amazing. The outcome is of course, not guaranteed and it is a long process for recovery involving a lot of intensive physiotherapy.
For most cerebral palsy patients, this operation is not funded by the NHS in the UK and is actually not even mentioned as routine. Because of this, we pushed for a referral to Leeds General Hospital to meet with an amazing neurosurgeon, who has trained in America. We had already started our application process to be assessed by Dr Park (the world lead) in St Louis, America. To our complete amazement, the surgeon said he feels the operation is suitable for Evie and he is even willing to perform it. Ecstatic would be a huge understatement to describe how we all feel. Seeing her cry happy tears for a change was fantastic.
We now need to raise the funds quickly for her to have the procedure before she starts university, which really is a dream come true!
Wherever she has the procedure, we will need to pay for the operation, scans, travel, accommodation for a month and then several years of intensive specialist SDR physiotherapy. Our family and friends will be fundraising as much as possible and any contributions we receive will be used to help Evie’s walking improve to be the very best she can possibly be.
Thank you so much for visiting this page and for helping Evie finally take control of her legs.
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