Help Support Evelyn and her Family

A note from Evelyn's mother, Laura...

Our beautiful daughter Evelyn (also known as our little pink power ranger! ) was born in November 2020, a happy, smiley and, from what we could tell, perfectly healthy baby. A little sister to Lexie, she was just perfect, and we couldn’t have been happier

Then in April, after noticing issues with muscle tone, we received a devastating diagnosis that she had a condition called Spinal Muscular Atrophy (SMA) type 1.

A rare, genetic, progressive and life limiting condition, it has many similarities to the better known Motor Neurone Disease. Type 1 is the most severe form.

After a few very tough months, we were fortunate enough for Evelyn to receive a glimmer of hope - a groundbreaking gene therapy treatment, which she received in June Although we can never be certain to what extent this treatment will impact her, so far she has been showing small signs of improvement, and we continue to pray it stops the progression of her condition

We still have a long way to go. We continue to take her into hospital almost on a weekly basis for a very comprehensive network of care, which she will require throughout her life. Our house is starting to resemble a hospital, and I’ve gone from delivering spa treatments to “nurse in training” - which has been quite a big adjustment!

She is, however, the most brave, incredible and awe-inspiring baby. Despite all her daily battles, medical tests and appointments, she is so happy She has the BEST sense of humour and smile And she teaches us a new lesson each day about bravery and resilience. A true little superhero ‍♀️

Thank you for taking the time to read

With love,

#TeamEvelyn