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Robert Powell raised £610 from 35 supporters
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Closed 15/12/2017
Weʼve raised £610 to help the Coates family make changes to their home to help with care for Noah and Gracie
- Funded on Friday, 15th December 2017
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Story
I did some fundraising last year to support Noah and Gracie, I ran the Lisburn Half Marathon, this was the start of an obsession for me and I’ve been running ever since. I’m running my first ultra marathon in November and I’m hoping to raise some more funds to help the Coates family
Gracie has been in my eldest son Seth's class since pre-school, they are now in P4.
Noah is Gracies older brother and was diagnosed at a very young age with a form of Leukodsytrophy, called Vanishing White Matter Disease. This is a very rare condition that affects the white matter on the brain. The condition was diagnosed after Noah had difficulty walking and now he's very limited in his mobility and needs a wheelchair. It is a life limiting condition and at the minute Noah's life expectancy is reduced to teenage years.
As this is a genetic condition, when Noah's sister Gracie was born she was tested and confirmed as having the same condition. She's doing really well at the minute with no outward sign of deteriation yet, but she has had a few worrying episodes so her family need to keep a close eye on her.
You can find out more at their website http://noahandgraciecoates.com Sara, their mum, is an old childhood friend of my wife (they met again after many years when our children where in the same class). She writes a very honest and heartfelt blog that is worth reading to gain an insight into what living with the condition is like.
Noah and Gracie are believed to be the only two children to have this form of this rare condition in Northern Ireland and the specialist that diagnosed the condition is based in Holland. There have only been 200 diagnosis worldwide.
The funds raised will be used to help with care for Noah and possibly create a sensory room in their home to increase his quality of life as his mobility reduces further
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Supporters
35
Robert Powell
Nov 21, 2017
Thanks Susan
£20.00
Robert Powell
Nov 20, 2017
Thanks Owen
£20.00
Joanne Love
Nov 20, 2017
well done Bert
£10.00
Leanne Clydesdale
Nov 18, 2017
Well done Robert, you are doing a good thing xx
£10.00
Anna Clifford
Nov 17, 2017
Well done Robert :)
£10.00
Robert Powell
Nov 17, 2017
Thanks Maureen
£10.00
Lynsey Grant
Nov 17, 2017
WOW! Well done Robert, mammoth task for a worthy cause
£10.00
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