Tuesday, February 21, 2012
Supermum Beverely Roberts is to jump from an aeroplane in a tandem skydive to raise funds and awareness for Battens disease
Lympstone super mum Beverley Roberts is so inspired by her terminally-ill daughter’s strength and courage she will plunge thousands of feet from an aeroplane to help others suffering from the same ‘cruel disease’.
Doctors told single mum Beverley her six-year-old daughter Amelia Rose, of Gibraltar Road, has a life expectancy of just 12, after she was recently diagnosed with the rare and fatal Battens disease.
Determined not to dwell on what the future holds, mum-of-three Beverley, 38, has drawn on Amelia Rose’s zest for life and on March 18 – the youngster’s birthday - will tandem skydive from an aeroplane to raise funds for research, while highlighting the degenerative neurological disease.
Beverley, who has single-handedly raised Honiton Mill Water School pupil Amelia Rose since she was six weeks old, hopes those touched by her daughter’s story will sponsor her aerial efforts.
She has never before been in an aeroplane, but said Amelia Rose’s ‘amazing’ spirit and day-to-day bravery had given her, and a group of friends, the courage to take the plunge.
Full-time mum Beverley said her daughter had defied medics and cheated death.
“She’s amazing, she has shocked the doctors,” said Beverley.” While she’s like that it gives me the hope and the strength to keep going for her and believe that we will get the cure - as long as I keep doing what I can to raise awareness and get the money rolling in for the scientists’ research.
“I have never even been in an aeroplane before. I am just going to go for it -whatever it takes.”
When Amelia Rose was born her mum had no idea her beautiful baby faced such a struggle for life.
When the clumsy toddler began displaying behavioural problems, Beverley suspected her daughter was autistic.
Medical tests were carried out when Amelia Rose had problems swallowing and walking, and the family’s life was turned upside down when doctors diagnosed Battens disease.
The once carefree youngster, who ran around like any other child, was soon confined to a wheelchair when the disease robbed her of her ability to walk. Blindness soon followed, as did epileptic fits and an inability to swallow food.
But it was during a routine hospital stay that Beverley’s daughter suffered complications and was placed in a coma in intensive care.
The youngster’s mum was repeatedly asked by doctors to consider switching off life support.
Now the family, who spent a ‘magical’ Christmas at Little Bridge House children’s hospice , say time with Amelia Rose is ‘precious’.
Beverley said: “I just couldn’t accept what they were telling me. When they were saying it, I was thinking ‘God, how can you ask me this? She will fight back’.
“Her spirit is so strong and she just fought back. If she can fight back, we will fight for her. Her spirit just shines, she’s amazing.
“Every moment is precious. I have had to arrange end of life care but I can’t think about that.”
● Sponsor Beverley at: www.justgiving.com/teams/bevroberts