Appeal for girl with rare genetic disorder raises £2,600
November was ‘Hannah month’ in Asda as staff helped raise over £2,600 for a little girl with an incredibly rare genetic disorder.
Six-year-old Hannah Johnsson has a neurological disorder which only one in 12,000 girls are born with called Rett syndrome.
Youngsters experience normal growth up to six and 18 months, before losing deliberate hand movements and having problems walking and intellectual disability.
Staff at Asda, in Sutton High Street, have been helping raise money for an eye gaze device which will help Hannah communicate, make some of her own choices and express herself.
Throughout November there were buckets on every till, a cake sale and a raffle. Starbucks, in the High Street, also kept donation buckets for Hannah and helped promote information about Rett Syndrome. Her mum Beth Johnsson also held a sale at the Salvation Army Hall.
She said: “Our little girl, Hannah, was born in 2007, as healthy and perfect as any parents could wish.
“For eighteen months Hannah developed as any healthy child does, meeting milestones and seeming ‘normal’.
“But then things changed – her speech stopped progressing, her mobility faltered, her hands started to tremor, she began screaming for no discernible reason, she started to pull out her own beautiful wavy brown hair in clumps, to the point where there was no alternative but to shave it all off.
Hannah with her family
“On the day she was diagnosed we had no idea what Rett Syndrome was and, perhaps fortunately, no idea just how bad it is.
Hannah with Debbie before her head shave
"Today, Hannah is six and a half, but developmentally, she is still eighteen months old, and may always be.
“A cure is the only hope for Hannah’s future, until then she is locked inside her own body and we are locked in a world where we grieve for what is lost, cling anxiously to what is here , and fear what may still disappear.
"I was recently asked to state, in one sentence, what Rett Syndrome had stolen from me. My reply – the little girl who lived with us for a while and whom I miss every day.”
To donate to Reverse Rett, a charity working to find a cure for Rett syndrome, visit their website.
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