A Chichester family is hoping their little boy will be able to enjoy running around with his friends when he undergoes a special operation to increase his mobility...
At the age of six, Finley Fairs is desperate to run around with his brother Charlie and friends at school, playing football and just generally enjoying being active.
But because of a condition called diplegia cerebral palsy, he can currently only get around using a standing frame or by using a wheelchair as his legs cannot hold his weight.
All that could soon change as his family have just been sent confirmation that Finley has been approved for a ground-breaking operation, which is currently only available by travelling to a specialist children’s hospital in America or paying privately for the operation in Britain.
Finley’s parents Lydia and Dean are as keen for him to enjoy being a six-year-old and as he is and now face a race against time to raise at least £24,000 by next April to pay privately for the operation which is called selective dorsal rhizotomy.
“Finley is a very happy and bright little boy who loves life but he suffers from painful cramps and low self-esteem because of his disability,” explains Lydia. “I can see he gets frustrated when he can’t do the things that his brother and friends can do.”
Improving quality of life
Without the operation at Frenchay Hospital in Bristol, Finley would face a lifetime of operations and botox injections to ease the stiffness of his muscles to try and make him more comfortable.
The condition is the result of Finley being born 12 weeks early; he receives daily physiotherapy and mainly crawls to get around the house and needs help with tasks such as dressing and getting up and down the stairs.
The operation, known as SDR for short, works by cutting some of the sensory nerve fibres that come from the muscles and enter the spinal cord.
The complicated procedure reduces resistance in the muscles thereby making it easier for patients to increase strength with therapy and exercise. Children who have received the treatment can often start types of exercise that were impossible before and quality of life is greatly improved.
For Finley, the operation could allow him to walk properly for the very first time. His parents are determined to raise the required cash as it breaks their heart to see him struggle with the pain in his legs.
“I will do anything to give my little boy the life he deserves,” says Lydia. “Hopefully one day this type of operation will be available to everyone but at the moment the only choice is to pay for it privately in the UK or go to the United States, and it is vital that Finley gets it now before his little legs get any worse.”
At the moment, there is only one neurosurgeon carrying out SDR in the UK and in May, Frenchay Hospital became the first in the country to offer the lifechanging procedure.
Last year Erin Eves-Cairns from Chichester, along with around 40 other families from this country, travelled to St Louis Children’s Hospital in Missouri for the operation, carried out by expert Dr T S Park, who has carried out thousands of these operations over the past 20 years. Up until May this was the only way to have the treatment. Being available in the UK now cuts the cost by half.
The procedure being offered by Frenchay Hospital is a new and less invasive version of SDR which concentrates on the lower part of the spinal cord.
It is carried out by consultant neurosurgeon Kristian Aquilina. The refined micro-neurosurgery reduces the risk of spinal problems in later life and also allows a quicker recovery so the long-term intensive physiotherapy which the children have to undertake can start sooner after surgery.
Lyisa said Finley would love to be able to ride a bike just like his brother, and that it would make a huge difference to him.
“Finley’s biggest wish is to walk like his big brother and to dance,” says Lydia. “He attends St Richard’s Catholic school where he gets so much support from his teachers and all the staff, but he is starting to find things harder as he gets older.
“We can’t let this opportunity slip by as Finley so deserves a chance to be independent and to keep up with his friends.”
As well as friends, family members and colleagues, Finley and his family are receiving help from the charity Caudwell Children which supports families caring for sick and disabled children.
Trudi Beswick, the charity’s chief executive officer said: “This type of operation has a proven track record of improving the lives of children with cerebral palsy and we are pleased to help try and raise the money they need. We need to raise a lot of money in a short period of time to give Finley the independence he deserves, so I urge anyone who may be able to help to contact the charity.”
Over the next month a number of events have been organised as part of the Fighting For Finley campaign, such as a jumble sale at Swanfield Community Centre on November 26 and a non-school uniform day being held at Finley’s school, on November 18.
charity for more details about the work of Cauldwell Children’s Charity.
If you have an inspirational story to tell for this page email firstname.lastname@example.org