Life in the pond - blog
|Posted on 5 November, 2015 at 18:30|
We are the lucky ones. We are, hangover days excluded, fit and healthy and able to travel the world. Some of us may live with minor disabilities, some are simply socially challenged, but for the most part - we are free to move and go and do what we want.
So, here's a chance to give back....We're fundraising for a wee boy that was born healthy but at age 2.5 was struck by a disease that left him unable to walk, talk or swallow. We can help him. Details of Euwan's story are below.
Fundraisier at Toad Hall, 7pm, 12 November - silent auction, a chance to purchase donated items, entertainment, refreshments. Come join in the fun.
Euwan needs your help, please.
Euwan was born healthy, and progressed to the age of 2.5 years as an ordinary happy bright boy.
Then our world was totally devastated by a rare and complex illness called ADEM.
ADEM stands for Acute Disseminated Encephalomyelitis. Euwan also acquired a genetic disease called Mitochondrial disease.
This affected Euwan's whole body. His brain, spinal cord and primary nerve bundles were all ruined by the ADEM.
Usually ADEM will affect a patch of the brain, and the child is left with mild to moderate lifelong disabilities. For Euwan, he can no longer walk, talk, eat or swallow. Before the illness he could walk, run, jump, climb, ride a bike, he loved his dog and was his big sister's little shadow.
Now Euwan suffers daily seizures. He is feed through a tube into his stomach.
Due to the disease processes within Euwan’s body, his spine is twisting. This reduces his ability to breath, which reduces his respiratory reserve and drives further brain damage.
Euwan enjoys swimming and horse riding. He attends Fair Haven School. In all areas he continues to surprise those around him as he ‘pulls through’ again and again. Euwan can continue to do this with help from a DMO suit. (Dynamic Movement Orthotics)
The suit needs to be custom made to fit Euwan’s unique needs. It looks a little like a burn victim’s pressure suit and costs $2500
We’re asking you to help raise the funds so a DMO suit can be purchased for Euwan. This will help him breath, relieve pain and enable him to be with his family longer with more quality of life. His little sister will have longer to make memories with her big brother.
You are invited to attend a fundraising event for Euwan to raise money for a special suit which will improve his quality of life.
You will be entertained by a local silk artist. She will show just how strong and flexible a well body can be.
Happy 8th Birthday Euwan
12 November – Thursday – 7pm
Toad Hall Backpackers – The Orange Room
BYO – donation to support Euwan’s suit purchase