Rogiet fundraisers for disabled tots need cash for daughter's crucial op
Updated 10:16am Monday 10th March 2014 in Gwent news
PARENTS who started fundraising for life changing operations for Gwent toddlers who have cerebral palsy are now trying to raise £40,000 for their own daughter to undergo the same procedure.
Ruby Atkins, the three-year-old daughter of Rachael and Antony Atkins, of Rogiet, was born 10 weeks prematurely on Christmas Day, 2010.
Mr Atkins and his friend Nic Matthews, 35, of Magor raised £2,500 by bike riding 250 miles from Holyhead to Magor in August last year initially in aid of the Maisie Cooper appeal and then for toddler Leo Dixon before finding out that Ruby was diagnosed with cerebral palsy.
Mr Atkins, 37, said: "We actually started out raising the money for Maisie Cooper as my wife is friends with Maisie's auntie. Maisie was born prematurely around the same time as Ruby so they were both in the neo natal ward in the Royal Gwent together.
"The bike ride was in August, by that time the Maisie appeal had already achieved its goal of £60,000, I spoke with Gareth, Maisie's father who said there was another child in Newport called Leo that the money could go towards. I got in touch with Kate, Leo's mother, and a week later Ruby was diagnosed with cerebral palsy -we hadn't considered what we were going to do but Kate insisted that we use the money to start our own fundraising campaign."
All three toddlers have cerebral palsy which is a neurological condition which affects the brain and nervous system. Both Maisie and Leo have had an operation called Selective Dorsal Rhizotomy (SDR) which involves opening up the spine and cutting nerves to reduce spasticity.
The operation aims to improve function and mobility and could enable them to walk independently. It is not currently being funded by the NHS and both toddlers have had to travel to America to undergo the SDR operation but the Atkins family hope that Ruby will receive treatment at Great Ormond street Hospital in London who are now offering the surgery.
Ruby's parents along with family and friends have already raised £15,000 towards funding Ruby's operation with a tandem sky dive and with runners in the Newport half marathon.
Mr Atkins said: "We are all friends, Leo and Ruby go to the same physiotherapist and personal trainer. The campaigns for Leo and Maisie show that there are a lot more children suffering from this with parents having to fund the operations by themselves.
"The hardest thing with all of this is that there is not a straight path for treatment. It has been very helpful to learn from the experiences of Kate and Mike as they know what we are going through."
Ruby was diagnosed with cerebral palsy when she was two and a half-years-old and currently relies on a kidwalk, which is a walking frame to help her walk.
Mr Atkins said: "She wasn't diagnosed right away even though she showed the classic symptoms - she was born premature, she had a bleed in the brain and wasn't mobile at two-years-old. This operation could change the outlook of Ruby's life all together. To walk independently would be such a joy, it's something you take for granted to be able to walk or play in the park."
She is to receive an assessment in August by Great Ormond Hospital and the family hope she will be able to have the operation by the end of the year.
Mr Atkins said: "Not being able to walk independently is very restrictive for her integration and playing with other children. She has one to one support in nursery, not for her mental ability but for her physical ability.
"This operation will be a huge help. We fund a lot of care for Ruby privately, she sees a physiotherapist every week which help stretch her muscles."
Staff at Mrs Atkins' work at the Ministry of Justice in Cleppa Park, Newport, are having a sponsored shave on Friday (March14) and in September Mr Atkins along with three of his friends will be taking part in a bike ride from Paris to Magor which is set to take four days.
To donate visit http://www.justgiving.com/rubyatkins
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