Looking for friendly advice and general chat for toddler living with INCREDIBLY rare genetic condition

(1 Post)
kelbymc Wed 26-Mar-14 15:12:40

Hi guys,

Thanks for taking the time to read this thread.

I am a journalist for the Daily Express, who has written an article about the tragic story of Melody Luckman - a 19-month-old baby who is unlikely to ever walk or talk after being born with CASK Gene Mutation.

LINK HERE: dexpr.es/1gmSybM

The adorable tot is one of only FIVE kids in the UK who have been diagnosed with the condition.

It is believed that there are only 50 cases worldwide.

The condition means she is unlikely to ever walk or talk and, at almost two years old, still can't sit up unaided.

Her lovely parents, Karen and Reg, are trying to raise awareness because they found it difficult to even find a doctor who knew much about it.

Does anyone know anything about the condition? Or know anybody who suffers from anything similar?

Would love to hear any thoughts, advice or any own stories you have.

You can follow Melody's progress via her Facebook page here: https://www.facebook.com/pages/The-Melody-Maker/511958502223125?ref=ts&fref=ts

Thanks.

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