Sending Rhyley to the Coffin Lowry Syndrome Conference

$1,590.00
funded of $6,000.00 goal
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Campaign Ends:
March 30th 2016
This is a flexible campaign

All funds pledged will be collected when the pledge is made.


Have you heard the old saying ‘living the life of Riley?’ It means to be living a comfortable, profitable life!

Please can I now share with you a slightly different interpretation?

 

Living the life of ‘RHYLEY’

 

Rhyley is the most gorgeous, loving, happy little 13yr old boy, who unfortunately doesn’t always have the reason to be, you see, Rhyley suffers an extremely rare condition called ‘Coffin Lowry Syndrome’.

When Rhyley was born, Australian doctors knew very little about this condition, how to treat or manage it, his condition is so rare in fact that statistics show that only 7 in 100,000.00 are diagnosed with this particular syndrome.

Rhyley’s 13yr life so far has been a roller coaster of health issues and hospital visits, last year being one of the worst, when during one of his emergency episodes he died in his mother’s arms, but being the fighter he is, he wouldn’t give up and fought to come back to her and once again lives to wear that trade mark ‘Rhyley’s smile’.

Unfortunately no one can say how long this precious boy is able to share his life with us, but we do know that his mum Donna and his little brother are doing everything possible to make every day count, giving Rhyley a life filled with love, fun and excitement.

Donna is a single mum who lives for her boys. Yes, there are many single mums and dads for that matter who struggle to raise children on their own, but add to that a child who has an extremely rare, debilitating condition, and please lets not forget Rhyley’s little brother, who often has to take a back seat for attention when total focus must be directed to Rhyley, but Donna does an amazing job, working full-time to support them, but still giving them all the attention they need, they are her priority, everything is for ‘her boys’.

This year there is a ‘Coffin Lowry Conference’ to be held in Washington DC, attended by families from all over the world, Donna has for some time wanted to attend, however, finance and Rhyley’s health stability had denied them the opportunity.

Rhyley’s health is presently stable, his nasal feed tube has been replaced by a stomach feed peg and his weight has had an incredible increased from 18kg to 28kg, so he is now fit to travel.

How wonderful would it be to help Donna and her boys get there? She could learn so much about the development of ‘Coffin Lowry’, about advancements, treatments and management, which at the moment she receives via overseas Internet activity.

It would be a wonderful experience for them to meet other parents, sufferers and siblings dealing with the same issues, not to mention what an awesome adventure it would be for the boys.

 

We would appreciate any donation you do to help make a fantastic chapter in the "LIFE OF RHYLEY"