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Kristi Hall-Busque hasn't added a story.
Benjamin is a 7 year old boy with an extremely rare neurological disorder called Ponto Cerebellar Hypoplasia Type III. There have only been four other documented individuals with the same disorder.
Due to his condition, Ben is pretty tiny - he turned 7 on August 13 but is the size of a two year old. Finding a sleeping system that worked for him took years and we were so lucky to discover a child sized recliner that we could adapt for him (he needs to sleep in a raised position with harness.) He has outgrown it though! Both unbelievable and awesome as we have never been sure of what size he will ultimately grow to be.
We've noticed that his head extends over the top of his chair and his
sleeping has become more restless. Due to his condition, he requires
sleeping medication and night time nurse, the least we can do is
provide great sleeping conditions for him.
Due the decline of the
Canadian Dollar, we are in a bit of a pickle... the cost of one chair
is currently the equivalent of what we can buy two for when the dollar
is stronger. Unfortunately, purchasing a new recliner is not
something medical and insurance providers deem as a necessary piece of
equipment which means it's up to us. The money we are asking for
would go directly to purchasing two new recliners for Ben (one for our
house and one for his dayhome).
I know how I feel if I don't sleep well... please help us
provide comfort for our little anomaly.
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