Meet the latest Bristol child who is having to pay to walk
JACK Rooke wants to play football but the youngster's cerebral palsy means it is difficult for him to walk, let alone kick a ball.
The four-year-old – who was born ten weeks early and suffered damage to his brain which means he cannot walk on his own – is the latest Bristol youngster whose family is raising thousands of pounds to fund life-changing surgery to give him the chance to walk again and hopefully play football.
His parents Hannah Trimby and Sam Rooke have a fundraising target of £35,000 to pay for the selective dorsal rhizotomy or SDR operation and subsequent physiotherapy, which is available at Frenchay Hospital to ease the tightness suffered in the muscles of youngsters with cerebral palsy – but is not routinely funded by the NHS.
The procedure has been available at Frenchay since last May and 37 youngsters have now had the operation, which involves cutting the nerves in the spinal cord to reduce tightness in the muscles. Of those, about half only took place after the patients' families raised the money for surgery, while the other half were funded by local NHS trusts.
Lloydbottoms TaxApp – tax rates, tips and calculators at your...View details
Our App will provide you with useful tax tools and information via your mobile device (iOS and Android)
featuring Tax tips, Tax calculators, Tax rates tables, Hot topics and more
Contact: 0117 244 3590
Valid until: Saturday, April 05 2014
But The Post understands that NHS Bristol, North Somerset and South Gloucestershire have not funded procedures for any youngsters in the area.
A consultation has now been launched that could see funding for SDR being considered by a national body rather than locally, which could stop the postcode lottery.
Last week The Post reported that Avonmouth youngster Evie Tucker had taken her first steps following SDR surgery in October. Corin Potts, of Yate, had the procedure last week.
Both children's families raised the money for their life-changing operations.
Bradley Stoke youngster Toby Cox had the procedure in the United States in 2010, before it was available in the UK, while the family of Jude Noble of Kingswood have been raising money for him to have the procedure at Frenchay Hospital.
Jack's mum said he usually crawls or takes tentative steps while holding on to furniture at his Whitchurch home.
"But he cannot let go without any support so he walks with a frame," said Miss Trimby, 26.
Jack has been seen by neurosurgeon Kristian Aquilina, who performs the surgery at Frenchay, having trained in the procedure at St Louis Children's Hospital. Miss Trimby said she has been told Jack meets the criteria for the operation.
She said: "When we first found out about SDR we just thought that if it was suitable for him, why not try something that gives him that independence in life, if it is one thing that will prevent him having to have procedures in the future?"
Miss Trimby said that while she "would love" Jack to walk, she is keen for the surgery to prevent her son suffering other issues such as his hips coming out of place.
Mr Rooke, who lives in Hengrove, said: "Jack loves football and loves music.
"He knows he can't walk and that other children his age can and he knows he has cerebral palsy and about the operation. Jack doesn't let it hold him back and is the happiest kid I know.
"But because at the moment he crawls, he cannot kick a ball unless you hold his hands."
Fishponds-based charity Cerebral Palsy Plus supports people in the Bristol area with the condition, has provided information for those fundraising for the procedure and helps to put them in touch with others who have been through the procedure.
Charity spokeswoman Cathy Truman said: "It is a very exciting surgery and our members who have had surgery have been very positive about it and is definitely something members are very, very interested in, because it is very local and there have been a few high-profile stories locally.
"I think it is quite ironic that this cutting-edge surgery is based here in Bristol and yet is not generally funded locally.
"It does seem to be very difficult for people to access this surgery."
A spokeswoman for NHS Bristol said the trust looked at all requests for funding for procedures on an individual basis.
"The PCTs have been in discussions with North Bristol NHS Trust, which is keen to establish a service for SDR," she said.
"During the course of these discussions, it became clear that this was a high-cost specialist procedure, which required regional or national commissioning, rather than locally through PCTs, to avoid inequitable access to the treatment."
Jack's parents have organised several fundraising events between them, including a match between rugby and football teams, a dance music night on February 2 and Miss Trimby and a friend will be sitting in a bath of porridge while having her hair washed in gravy.
To donate to Jack's appeal visit www.justgiving.com/Jacks-will-to- walk.
For more information about charity Cerebral palsy Plus, visit www.cerebralpalsyplus.org.uk.