Meet Josh - a gorgeous happy go lucky 4 year old little boy, he enjoys doing all the things every other child enjoys and loves life , but things are not as easy for Josh as he has a rare condition, so rare in fact it has no name SWAN, syndrome without a name.
He has hypotonia which means he has low muscle tone and some days can struggle to walk, He also has high risk of aspiration so chokes on fluids and sleep apnea which means he stops breathing in his sleep. But due to the aspiration he chokes on his salvia.
Josh will sleep with machines and alarms that monitor his breathing throughout the night and Global developmental delay means he is mentally 12 months, alongside all this Josh is diagnosed as autistic and is non verbal which makes it very difficult for him to communicate his feelings and needs.
But Josh does not let any of this hold him back , In order for him to move around as freely as possible Josh needs specialist equipment including a car seat adapted to his needs amongst other things.
Tragically the family car was stolen off the drive, early hours of the morning Monday the 14th of December, sadly with it went all Josh’s specialist equipment he so vitally needs to get about including his car seat. The police have been unsuccessful in finding the car.
I would ask for a donation no matter how small in order to get Josh a replacement car seat he so desperately needs, in order to enjoy life as best he can with the struggles he faces.
Thank you for taking the time to read Josh’s story.
- James Poole
- Annmarie Lynch
- Vickie Mckenna
- Helen (Coles nanny)
- Angela Paddick
Organizer and beneficiary
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