Morning all,
Our great nephew is 2 ½ years old. Less than a year ago the medical profession diagnosed his condition. He was born with ATR-X syndrome, the only person in New Zealand to have it, and there are roughly only 200 people in the world that suffer from this disorder.
Basically Bryson is mentally impaired, deaf, will never talk, crawl, walk or be able to feed himself, and has only just gained enough muscle strength in his core to sit in the last six months, and medical history of people who have died from this syndrome give him a lifespan of 2 to 20 years old. The most recent discovery of his condition is that Bryson’s knees will dislocate regularly (it has even happened while he was sleeping), due to the lack of muscle etc that healthy kids have, and Bryson now wears ‘magic legs’. Metal rods sewn into fabric that are velcroed around his legs every night, and sometimes during the day when he is in pain.
In order to give Bryson more stability and experience being in his body as if he had developed muscles, the local Lions Club are fundraising to have his first special suit made for him that replicates this (each suit costs $2,500 NZD).
These suits are only made in the UK, and have to be regularly updated as he grows and remade to maintain their effectiveness.
'Give a little' trust is designed for Bryson's future as he requires further suits to be made for him, and operates as a trust account so that people can be assured the money is being utilised effectively.
Any assistance in building up his trust for future suits would be fantastic, as being a two year old boy, he is now beginning to grow faster every day!
For more information on him, or to make a donation towards his ‘magic suit’, please click on the link below.