Cyclist travelling from Land’s End to John o’Groats for St Neots girl with rare disease
SIX-YEAR-OLD Maisie Beatty is proving to be an inspiration.
Maisie, who has rare genetic disorder, has had to deal with numerous fractures to her right leg and countless operations, yet remains a happy, bubbly child.
Her story has inspired one family friend to take on a gruelling training programme, which will culminate in a 900-mile bike ride from John o’ Groats to Land’s End in aid of Great Ormond Street Hospital where Maisie was treated.
Daniel Cornwell, 36, a father of two from Eaton Socon, said: “I lost my own father to cancer at the age of 19. He was just 47. I know it sounds corny but I like to help other people and I am in a fortunate enough position to be able to do it.”
Mr Cornwell cycled from London to Paris in 2009 and lost three stone in the process.
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“This is an even bigger challenge – and I don’t know if I’ll be able to do it,” he said, “but I’ll give it my best shot.”
Maisie, who lives with her family in Clover Road, Eaton Socon, was born with McCune-Albright syndrome for which there is no known cure.
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It occurs only by chance – a mutation of a gene in the embryo – and symptoms can vary dramatically.
Maisie’s father, Simon Beatty, 39, explained: “How badly the condition affects the patient depends on when the mutation takes place.
“We first noticed Maisie’s symptoms when she was five months old. She had an over-active thyroid which made her irritable and hyperactive. Other symptoms started to appear over the next six months when she started to try to walk, and it was only a chance remark to one of the doctors she was seeing at Hinchingbrooke Hospital that led consultant Martin Becker to diagnose Maisie with McCune-Albright syndrome.”
Maisie’s symptoms include bone weakness and accelerated bone growth. It has left her right leg shorter than her left and it has her confined to a buggy for a lot of the time.
“Maisie’s bones are so soft that she’s broken her leg six or seven times,” Mr Beatty added. “One little trip can break her bones, but she’s now been fitted with two titanium telescopic rods that make her leg more robust.”
Despite dealing with symptoms that would dispirit most people, her father said, Maisie was a happy child who loved attending Crosshall Infant School with her brother, Giacomo. She loved art, using a computer and was taking piano lessons.
“We go down to Great Ormond Street Hospital once a month where Maisie gets her clinical trial injection,” Mr Beatty continued. “She just gets on with it .. . she’s an inspiration – always smiling and happy.”
Another symptom Maisie must face is the early on-set of puberty, which, if left untreated, could cause her to stop growing.
But her parents are hoping that with the clinical trials she is currently undergoing, Maisie’s life may be relatively normal by the time she reaches her teens.
“At the moment, thanks to the clinical trial, Maisie has stopped growing so fast,” her dad said. “She can even take small steps with a zimmer frame.
“The plan is that, once she’s stopped growing, doctors will eventually be able to break and reset her bones to straighten out her right leg.”
Mr Beatty will join his friend on the 16-day bike ride, hoping to raise as much money as possible for both Great Ormond Street Hospital and Macmillan Cancer Relief.
INFORMATION: To sponsor Daniel on his 900-mile trip visit www.justgiving.com/Daniel-Cornwell0