Everyone thinks their child is one in a million – my son Murray is one in 464 million.

Murray has an extremely rare genetic disorder which affects his global development and which is one of only 15 known cases worldwide.

We first realised there was something wrong when, at 6 months old, he couldn’t sit up. It took almost 2 years of tests and scans for his partially deleted chromosome to be diagnosed. As neither my wife nor I carry this micro deletion we are told “it’s just one of these things”.

Now aged 3, Murray still can’t sit up by himself and has no mobility or communication skills. However, he does have the most amazing smile and the best giggle in the world.

Our search for answers has taken us to The British Institute for Brain Injured Children (bibic) for an initial assessment and development programme. Their assessment places Murray’s development at that of the average 9 to 12 month old. By following their recommended daily programme of exercise and stimulation we have already seen improvements in his awareness and development.

Although bibic is heavily subsidised, it still costs around £500 per visit, with a couple of visits recommended each year, this doesn’t include travel and accommodation to their Somerset centre.

Bibic has a very good success rate but we are aware there is no miracle cure and indeed no guarantee Murray will ever walk or talk, but while there is any hope we will do all we can…so any amount of sponsorship would be a great help.

 

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You can also sponsor by texting to 70070 start your message with MMCK99 then amount in £'s ie MMCK99 £10 you will then receive a text asking for gift aid and any message, please put you name so we can thank you.

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