Family of Monmouth youngster hope to raise £40,000 for pioneering operation
10:00am Sunday 2nd September 2012 in News
THE family of a Monmouthshire girl are aiming to raise £40,000 for a pioneering operation that will change her life.
Six-year-old Chase Vaughan, of Cornwallis Way, Monmouth, who was born 15 weeks early- weighing just 1lb 8oz- needs a radical procedure not funded by the NHS in Wales to save her from relying on a wheelchair.
Chase suffers from a debilitating nerve-muscle condition known as spastic diplegia cerebral palsy which means that she walks on her toes, has stiffness in her legs and poor balance and coordination.
Her mum Helen Morgan, 30 a self-employed accountant, fears her mobility could deteriorate if she does not undergo an surgical procedure known as selective dorsal rhizotomy (SDR) to help avoid further muscle deterioration and stiffness.
Chase, a pupil at Osbaston Church in WalesPrimary School, wears splints and has regular physiotherapy but remains determined to go horse riding, swimming and playing tennis.
"She is very stiff when she walks and requires a lot of energy just to do normal things," said Miss Morgan.
The SDR operation was only available in the US until recently but is performed at the Frenchay Hospital, Bristol at a cost of around £25,000.
A further £15,000 is needed to pay for physiotherapy and aftercare. Miss Morgan is appealing to anyone who can help with fundraising ideas to contact her on 01600 712856.
She has set up a Facebook page- A Big Wish for Chase-and a JustGiving site www.justgiving.com/helenmorgan8.
Hospitals in Wales do not perform SDR or offer NHS in Wales funding due to a lack of clinical evidence. Only those considered to have exceptional grounds for treatment can be considered for funding in hospitals elsewhere in the UK through the All Wales Individual Patient Funding Requests.
The All Wales Policy says requests can be made for those who fall outside the range of services and treatments that a health board has agreed to routinely provide. This could be for patients wanting a new or developing treatment or who have a rare or specialist condition.
SDR has been available at Frenchay Hospital since May 2011 and has performed 27 successful operations. In England, an application for individual funding request is submitted to the childÕs Primary Care Trust if they are deemed suitable. If unsuccessful, the parents can opt to pay £25,000 privately.