Plymouth schoolgirl with rare condition lifts weight of 11-year-old boy to raise cash for charity
Watch Jacquie Bird's report
A 10-year-old girl with a rare condition has raised more than £6,000 to find a cure - by deadlifting the weight of an 11-year-old boy in a fundraising challenge.
Phoebe Ames from Plymouth has Friedreich's Ataxia, a neuromuscular disorder which affects one in 30,000 people.
People who have the condition could end up needing a wheelchair by the time they are 20. They could also develop diabetes, heart problems and other issues.
Phoebe said: "I was born with Friedreich's Ataxia, which is a rare condition. We found it out when I was seven but at first it didn't mean much to me. It was like, 'Oh, okay, I've got this.' But when I was turning nine, I was like, 'Okay, this is going to change my life.'
"It affects my nervous system, which means that I fall over more easily. There was a day when I fell off all the chairs at school."
Research has led to improved treatment and there is hope the rate of deterioration can be slowed and one day a cure will be found - but such research needs funding.
Each May, fundraisers across the world take part in the "Lend Us Some Muscle" campaign to contribute what they can and Phoebe was inspired to join in, setting herself the challenge of lifting 30kg.
She said: "It was very shocking on that first day when you realise, '£1,000 - wow!' Now I'm up to £5,821. It's just completely blown my mind."
Phoebe smashed her target and was able to lift 24kg after taking up deadlifting at Mindset Gym in Plymouth. She finds it gives her a positive attitude towards exercise as well as taking her mind off her Friedreich's Ataxia.
But she did not always feel that way, even though it is crucial for her health.
Phoebe said: "I hated exercises. I thought, 'No, I'm not doing this, it's a waste of time.' I'd scream. I'd cry if I had to do them."
Powerlifting has turned her around and staff at Mindset Gym are in awe of what she has achieved.
They said: "An incredible young lady, Phoebe doesn’t let her condition hold her back, especially when it comes to her training sessions. Her commitment, energy and enthusiasm for training is infectious and she always give 100%, whatever the exercise!
"She walks out of each session with an even bigger smile to the one she came in with - and that’s BIG!"
Phoebe worked towards her big lift throughout May and finally her training paid off and she was able to smash her 30kg target, deadlifting 34kg three times in front of a socially distanced audience.
In doing so, she raised more than £6,000 for Friedreich's Ataxia Research Alliance - her contribution alone made up a quarter of the campaign's fundraising target.
Her mother Hannah Ames is delighted with her daughter's achievement. She said: "I feel so proud of her because I know how much she struggles every day with her condition and I just feel immensely proud and she's so brave and courageous.
"She's done a really fabulous thing but really brave thing - making everybody aware of her condition, going really public with it, and then also raising a huge amount of money for the big research charity in America."
The little weightlifter is not stopping at 34kg. She has big plans ahead - Phoebe said: "I would like to lift 50kg next year, then 100kg the year after that, then try to break the Paralympic world record."
You can find Phoebe's 'Lend Us Some Muscle' fundraising page here.
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What is Friedreich's Ataxia?
Friedreich's Ataxia (FA) is a debilitating, life-shortening degenerative neuromuscular disorder, which affects about 1 in 30,000 people. It is most commonly diagnosed between the ages of 5 and 18 years and robs children and young adults of their mobility.
FA leads to a loss of muscle coordination, fatigue, vision impairment, hearing loss and slurred speech, scoliosis (curvature of the spine), diabetes and serious heart conditions.
It is caused by an inherited genetic mutation that limits the production of a protein called frataxin. 1 in 90 people are carriers and don’t even know it until it affects their family.
Source: LendUsSomeMuscle.com
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