It is with a heaving heart I write this post. Our darling, brave girl Evie Shears was tragically diagnosed with a very very rare terminal cancer, leptomeningeal carcinomatosis.
On the 15th august after 10 very exhausting days at GOSH we were allowed to bring our darling girl home.
After a very tough 15 weeks Evelyn passed away peacefully in her daddys arms on Thursday 27th November 2014 aged 2 years and 10 months. Evelyn was very strong, always was, but there was no cure or treatment available to her.
We thank you all for all your support and messages of kindness and please continue to support us by going to www.evieboo.muchloved.com
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 thedrop 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