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LoveQuiltsUK - Evie A's quilt

Evie A's quilt   (Quilt Coming Soon)

Born:2014
Illness: MEF2C Haploinsufficiency syndrome

Theme: Animals


Quilt will open soon, keep checking back!
Photo of Evie A

Theme details

Animals - Animals-soft Ones You’d Like To Snuggle, for example kittens, puppies, rabbits. Cute style please. (No outline/geometric/mandala)



Child Interests

Evie loves blues, pinks and purples.
She loves animals, rainbows and sparkly things.
She loves the sunshine, bees and butterflies.


Biography

Evie was born via emergency c-section due to the doctor not detecting a clear heartbeat. Despite this everything seemed ok when she was born. When Evie reached the age of 5 months she needed her first pair of glasses due to a squint detected in both eyes. She sadly had her first epileptic seizure when she was 9 months old and was diagnosed at 10 months. She continued to have a number of severe and prolonged seizures all of which lasted over an hour resulting in long stays in A&E.

In 2016 Evie had a horrific seizure which ended with her having to be intubated and taken onto intensive care. She woke a week and a half later having lost her ability to sit up, eat and she didn’t appear to recognise myself or her dad, she was very distressed. We spent a further 5 months in hospital undergoing hundreds of tests. Evie’s MRI scans showed she has significant brain shrinkage and a probable neuro-metabolic condition for which we are still awaiting a diagnosis. We were sadly told due to the extent of her brain shrinkage that she wouldn’t live for very long.

Thankfully Evie is still here nearly 6 years on and we have a partial diagnosis which explains some of Evie’s condition but not all. The main thing is Evie is a happy little girl who loves life and we make the most of this every day.






















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