Appeal to fund 'life-changing' operation for brave Sophie

SOPHIE and her identical twin sister Heidi are just like any other sisters their age; they enjoy each other's company, play games and even bicker and fight.

But there is one glaring omission from the treasured family album – a photo of the twins running around with each other playing in the park.

"To look at the girls sitting together playing, you wouldn't be able to point out which twin has the disability," said their mother Gemma Down, 26, who lives in Beacon Heath with partner Daniel Case.

"It is not until Heidi gets up and runs around, and Sophie follows behind on all fours, the differences are noticed. It shouldn't have to be like this, when you think about having twins you think of them reaching all of those developmental firsts together and the fun and games that should bring with it.

"You think about running down the road chasing after two toddlers, not one while you're carrying the other."

The twins were born eight weeks prematurely in December 2009 by emergency caesarean section and spent a month on the neonatal unit at the Royal Devon and Exeter Hospital. For the next few months both girls were doing "brilliantly".

"It wasn't until Heidi started to do things a lot sooner than Sophie that we noticed she was a little delayed with her mobility. At the time it was put down to the twins' prematurity," Gemma said.

Sophie was subsequently diagnosed with spastic diplegia cerebral palsy when she was 15 months old. The family have now launched an appeal to raise £50,000 for an operation and aftercare they hope will "revolutionise" her life.

"Sophie has coped remarkably and in a sense she doesn't know any difference," added Gemma. "She is such a determined little girl. She has pushed herself to reach milestones which have come as a struggle. Having her twin by her side has in a way spurred her on.

"In another sense however, having a twin sister who was reaching milestones way before she was able to and in some cases is still unable to, has come as a frustration to Sophie. This has become more apparent recently now her brother has just turned one and is also walking confidently – how disheartening for an almost three-year-old to see, and how upsetting for us as parents to see.

"She watches her brother and sisters running around independently, while she has to rely on a frame to help support her body upright and enable her to take aided steps. Although Sophie has come on remarkably, from only being able to commando crawl when she first started physiotherapy to being able to walk using her frame, she longs to be running around with her twin sister Heidi, big sister Lily and little brother Barrett.

"She longs to dance around the room like her twin when music comes on the television.

"She longs to wear girly shoes like her sisters do and not have to be restricted to one pair of NHS boots which give her the support she needs. This will become more hard on Sophie over time when she will also eventually have to wear leg splints – the only way to prevent her from toe-walking which is unfortunately inevitable to an extent with cerebral palsy."

Sophie will wear leg splints, supportive boots and have physiotherapy for the rest of her life to manage her condition. It will never cure it.

However, the family have recently found out about an operation called selective dorsal rhizotomy.

Gemma said: "SDR is at present the only surgical procedure which can provide permanent reduction of spasticity in cerebral palsy and results in improvements in balance, standing, sitting and walking.

"It involves cutting the nerves in the lower spine which are responsible for causing muscle rigidity, and has had 100 per cent success rate to date," said Gemma.

"After researching this tirelessly we are now pursuing this for our daughter. This operation could give our little girl the key to a brighter future, where she's able to get more from life than what her disability restricts her to.

"It will mean she doesn't have to be restricted to wearing one pair of supportive boots and can wear pretty girly shoes like her sisters. It will mean she will be able to finally dance like Heidi and it will mean a better quality of life.

"Unfortunately however, this is a new procedure in this country which means it isn't widely done, and those which have been done to date aren't always funded.

"This is why we have come to the decision to start fundraising now. Also the aftercare that Sophie will need is just as important as the operation.

"It is the spasticity in Sophie's legs which is currently helping to support her weight, and when this is cut Sophie will have to learn to build up the strength in her muscles again, to take aided steps again and hopefully learn to walk independently.

"This will take about a year of intensive physiotherapy, which again won't all be funded on the NHS.

"We are in the process of applying for this operation at Bristol's Frenchay Hospital, and they have already been told that Sophie is a "good candidate" for the operation.

The family launched the fund-raising appeal called 'Stepping With Sophie...in her wish to walk' at the beginning of this month with the help of Tree of Hope Children's Charity. They have also set up a JustGiving page which can be found at www.justgiving.com/stepping-with-sophie

Gemma said: "We have already received £585 of donations from family and friends and have got a few fundraising events in the pipeline, which once organised will be posted on Sophie's webpage and blog at www.stepping-with-sophie.blog spot.co.uk."

People can also visit www.face book.com/SteppingWithSophie where they can follow Sophie's journey and the appeal's progress.

"Being a working family, bringing up four children, we need all the help and support we can get," Gemma said.