Weʼre raising £5,000 to Evies Journey | Fundraising for Evie-Mae Belcher to support her care | Evie is five years old & has INAD - a rare terminal genetic disease
Crowdfunding is a new type of fundraising where you can raise funds for your own personal cause, even if you're not a registered charity.
The page owner is responsible for the distribution of funds raised.
In November 2014 at the tender age of 2, our beautiful Evie-Mae was diagnosed with INAD - Infantile Neuroaxonal Dystrophy.
INAD is an incredibly rare genetic disease - affecting the nerve axons (which are responsible for conducting messages) in the brain and other parts of the body, causing a progressive loss of vision and of physical and mental skills. Eventually the combination of the diseased brain and physical weakness becomes too great to sustain life, and death usually occurs between the ages of five to ten years.
As a family, we have had to watch Evie lose previously acquired skills - we no longer can hear Evie talk, watch her walk or see her sitting up by herself. Evie has been tube fed for almost two years as she no longer can consume food by mouth. Despite the challenges she faces everyday, Evie remains one of the most resilient kids you will ever have the pleasure to meet, with the most beautiful smile and incredibly sweet nature.
INAD is a progressive and terminal illness - all we can do is make Evie as comfortable as possible for as long as possible.
This page has been created to help us to give Evie the best complimentary treatments and equipment as possible. Evie really benefits from massage therapy and requires extensive care and equipment - things like her massage therapy, car seats and mobility equipment aren't always funded.
All money raised will go towards Evie's care - be that massage therapy, mobility equipment or anything that gives her the best quality of life possible.
Find Evie on Facebook to follow her story: https://www.facebook.com/eviesjourneyx/
More detail on INAD can be found here: http://www.gosh.nhs.uk/medical-information/infantile-neuroaxonal-dystrophy
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