Four-year-old Connor just wants his brother to walk
A four-year-old from South Wales is trying to raise £60,000 to help his disabled twin brother walk independently by paying for a ground-breaking operation in America.
Brothers Connor and Cieran Jones from Port Talbot were born twelve weeks prematurely and spent the first 3 months of their lives in the Special Care Baby Unit in Bridgend.
Following their first birthday Connor was given the all-clear, where as Cieran was diagnosed with Spastic Diplegia Cerebral Palsy; a type of brain damage which affects his mobility and means he has to use a wheelchair or walking frame.
The future for Cieran looked bleak, with a multitude of operations and botox injections expected to try and ease the rigidity of his muscles to try and make him more comfortable. That was until Mum, Emma, discovered a ground-breaking operation available in the United States which was releasing muscle tension in Cerebral Palsy sufferers and, in some instances, allowing them to walk independently for the first time.
Emma commented on the discovery: “It is really heart wrenching to consider the prospect of operation after operation and endless stays in hospital for my beautiful little boy. When I read about this treatment and then discovered how successful it had been for other children, I knew it would save Cieran lots of pain and discomfort as he get older and made an appointment to ask our specialist about it.”
The treatment is called Selective Dorsal Rhizotomy and involves cutting some of the sensory nerve fibres that come from the muscles and enter the spinal cord. The complicated procedure reduces spasticity and it becomes 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.
The operation is not currently available on the NHS and the Centre for Cerebral Palsy Spasticity in St Louis, Missouri are the World’s leading specialists.
Now, four-year-old Connor is fundraising with his Mum, Emma, and Dad, Neil, to pay for the treatment at the St Louis Children’s Hospital but needs to raise £60,000 in just 3 months.
Emma added: “Connor is incredibly close to his brother and looks after him, pushing his wheelchair or helping him get around. He has been actively involved in the fundraising we have done so far and I know he would do anything to help his brother have a better life. As twins they have a very special bond and I know Connor will be as happy as us if we reached our target of getting Cieran to America.”
Helping the Jones family raise the money for the trip are national charity, Caudwell Children, who support families caring for sick and disabled children.
Charity CEO, Trudi Beswick, commented: “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 Cieran the independence he deserves, so I urge anyone who may be able to help to contact the Charity.”
Anyone interested in helping the Cieran Jones Appeal is asked to contact Caudwell Children on 01782 600114 or to donate online visit www.justgiving.com/cieranjonesfund
Important note to donors: As long as Cieran Jones requires the funds raised to pay for treatment in the United States, Caudwell Children will manage all payments of funds for the Jones family. Should there come a time, for whatever reason, that Cieran no longer requires the funds raised for medical treatment and living expenses while in America then the monies raised will be used to provide similar donations to sick and disabled children living within the UK through the charity, Caudwell Children.
