As I get older i must be losing my marbles because on Saturday 26th April i will be taking part in the London West Tough Mudder! In case you're unfarmiliar with the concept, the Tough Mudder is a 12 mile cross country obstacle course. I am voluntarily signing up to be electrocuted, crawl under barb wire, run through fire, climb over walls and get covered in mud (LOTS of mud).
But I am doing all of this for a very special little girl named Evie....
Evelyn (Evie) Shears, the beautiful daughter of Aimey and James Shears, was born on 18th January 2012 at 7.27am in Kingston Hospital. Evelyn’s arrival into this world was incredibly distressing. Evelyn was born with the cord round her neck twice and during the final stages of labour, Evelyn suffered significant trauma and subsequently suffocated. For the first 3 days of her new life, Evelyn was “cooled” through a procedure called ‘Therapeutic hypothermia’. This treatment involved lowering her body temperature to 32-34°C while unconscious, using a blanket or mattress filled with air or fluid. The purpose of this treatment was to cool Evie’s developing brain and slow down the rate of cell damage. Following this, Evie endured MRI scans and these revealed that she has Severe Hypoxic damage (significant brain damage in many areas).
On Tuesday the 7th February, whilst coming to terms with this devastating news, Aimey and James were hit with another huge blow. Their beautiful baby girl was found to have Retinoblastoma in both eyes. The family were consequently rushed to the London Hospital. Treatment for Retinoblastoma left Aimey and James with no other choice but for their precious little girl to undergo vigorous Chemotherapy at Great Ormond Street.
With current diagnoses of Cerebral Palsy, a movement disorder as well as Retinoblastoma, learning basic life skills including the simple concept of controlled movement, will be a huge challenge for Evie. She will continue to require high levels of specialist support for the future.
HOW WILL YOUR MONEY HELP?
We are desperately hoping that Evie will have access to rehabilitation centres as many as three times a year! There are numerous recommended centres in the uk and abroad.
Due to the nature of Evies cancer we are struggling to make the big trips to rehabilitation centres that Evie so desperately needs! Our frustration is that Evie needs oncology check upsevery 3 weeks with grey cloud of invasive treatments always looming.
We also have a massive hurdle to overcome, Evie cannot tolerate any form of seating, not one, no car seat, no buggy, no baby harnesses, you name it we've tried it. With OT's, physio's all helping! Evie will learn one day soon that she's safe, but with so much interference in her routine and her body, she really needs time.
When the time is right we want to know we can take Evie for rehabilitation at the drop of a hat. Your fundraising will ensure that happens.
So for now your fundraising helps pay for private weekly therapies.
This will include appointments with Occupational Therapists, hydrotherapists, Physiotherapists, Speech and language Therapists, Specialist Nurse support and Specialist Education provision to name a few. The list is endless. Visit her website at www.enablingevie.co.uk