A HUNTINGDONSHIRE community is pulling together to raise money for six-year-old Molly Moore, a little girl who is undergoing rehabilitation after having her second strokes. Molly has PHACE syndrome – a condition so rare that only 200 children in the wor
A HUNTINGDONSHIRE community is pulling together to raise money for six-year-old Molly Moore, a little girl who is undergoing rehabilitation after having her second strokes.
Molly has PHACE syndrome - a condition so rare that only 200 children in the world have been diagnosed with it.
She was born with the syndrome, which causes problems with the arteries in her brain, and had a first small stroke aged just 17 months.
Apart from slightly affecting the movement in her left hand, Molly carried on as any other child until last August when she had a second stroke. It left her unable to move, speak or swallow.
Molly, who lives with her family in Offord Cluny, is being rehabilitated at a specialist centre in Surrey run by the Children's Trust where her treatment costs £7,000 a week.
While the NHS is likely to continue paying for her treatment (there is a meeting tomorrow, Thursday), the parents of some of Molly's school friends have started fundraising to ensure her family can adapt the house to her needs when her six-month rehabilitation treatment is finished.
The first fundraiser has seen 11 parents sign up to tackle a charity run.
Molly's mother, Katie Moore, 37, said: "No one call tell us how much she will recover or how long it will take."
She added: "It was a nightmare, I got a phone call to say that Molly had said 'my head hurts' and then collapsed. Her recovery so far has seemed like a miracle."
A week before Christmas she laughed for the first time since the stroke.
"She didn't make any sounds but we could see her shoulders shaking - her dad was in the kitchen pretending to let her little sister, Daisy, push him over and Molly thought that was very funny.
"Just over a week ago Molly started to talk again. She was so polite, the first thing she said was 'Mummy, I'm hungry, can I have some breakfast please'.
"She can say short phrases and her memory has not been affected.
"She can read and she knows the alphabet. She can spell her name and do simple sums. She also remembers events from last summer holiday before she got ill."
Molly is also getting some movement back. She can move all four limbs, can roll over in bed, hold up her head for a short time and also managed to walk in the gym while her weight was supported.
Molly has been receiving meticulous care with therapists at the Children's Trust Centre in Tadworth, said Mrs Moore, including physiotherapy, speech therapy, occupational and play therapy and school sessions.
Her parents and her grandparents have a system which means Molly always has one of her family with her in Surrey and she returns home every weekend.
Dad, Jason Moore, 39, a builder, has adapted his van so it can take a wheelchair, but while the family hope Molly will recover fully, they estimate they could need up to £90,000 to adapt their house.
The first £5,000 should be coming from parents of children at Offord Primary School, who are taking part in the Sandy 10k and 3k runs on Sunday, April 11 - the day Molly's current placement ends.
As Molly goes through her recovery she will need items such as a table suitable for a wheelchair user, a computer keyboard with big letters and an electric wheelchair.
Organiser Claire Dawson, one of the runners, said: "My daughter Ellie is in the same class as Molly, they started school at the same time.
"Molly's mum Katie texted me from the hospital when this first happened and we were all very shocked, you don't expect this to happen to a child. It was very worrying.
"Everyone wants to help and some of the children will be taking part in the fun walk."
The other runners are Pam Hemmingway, Michaela Ridley, Alison Glass-Parker, Jane Chand, Ian Knibbs, Mike Cartwright, John Rodgman, Gabi James, Louise Boyd and Kerry Fielding.
The runners will have a "10 Miles for Molly" logo on their t-shirts and sponsor forms, specially designed by A M Screenprinting Ltd in St Neots. Other sponsors are the Horseshoe Inn, Proactive Learning, Offord Motor Company and Waterside Leisure at Buckden.
INFORMATION: To sponsor the runners contact Claire Dawson on 01480 811151.