We are a group gathered together by Salisbury and Oxford centres for excellence in cleft care. We are made up of parents and patients with links to the care teams at Salisbury and Oxford hospitals.

Our aims are to support children and adults who have a cleft and to encourage them in different ways to give confidence through meeting others with clefts and to help in reaching their potential.

We run fun days for younger children and take families for days out for a really positive experience. We organise trips to the theatre and arrange activities such as family arts days, climbing and flying to excite, stimulate and encourage confidence.

We have strong links with all the teams of health professionals - doctors, nurses, speech therapists amongst others - who also support and encourage all the activities we do as well as assisting financially with things that the NHS would otherwise not be able to fund.

Our supporters are widespread and we are delighted to have a vast array of people amongst us who give up their time to support all the things we do as a voluntary group.

Spires Cleft Centre at the Salisbury & Oxford District Hospitals

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John - 07850 776238
Ann - 07910 382584
Denise - 07897 981707

Registered Charity: 1161277

Sky’s the limit for Laura and Gracie

A family took to the skies and raised nearly £3000 to help purchase equipment for breastfeeding mothers whose children have cleft palates.

Laura Edginton’s daughter Gracie is two and a half, and was born with a cleft palate associated with Pierre Robin Sequence. Since she was born in October 2015, the family have attended the Spires Cleft Centre at the John Radcliffe Hospital for her treatment.

Laura was determined to breastfeed Gracie, however found that Gracie’s cleft palate meant she had to express her milk rather than nurse her.

“I was so sure I could breastfeed Gracie,” said Laura, “that I found it really difficult to accept when I physically couldn’t. I had to express my milk to feed her through something called a nasogastric tube, but the pumps to go with them weren’t always available – other mums were often using them.

“I was lucky enough to get a pump the morning we took Gracie home, but I realised that there just weren’t enough pumps to go around.”

Determined for other mums to be able to express their milk, Laura rounded up her family and decided to raise money for more pumps.

“A skydive seemed like a good idea,” said Laura, “and soon enough my whole family were on board – Gracie’s dad Ben, my dad Mike, Gracie’s aunt Amelia, and even Ben’s grandmother Barbara!

“We were really nervous before the skydive, but excited too – especially since we knew it would help other babies like Gracie. Once we were in the plane and it started getting higher and higher, the nerves really kicked in – but we were all strapped so tightly to the instructors that we didn’t have a choice once they jumped out! Once we were out of the doors it was absolutely amazing – the most incredible thing I’ve ever done, and such a great experience.”

Back on the ground, the family’s £2850 went towards 12 breast pumps through Spires Smiles, a local charity made up of local parents and patients to support people who have a cleft palate. The pumps now have pride of place in Spires Cleft Centre in the John Radcliffe Hospital.

Laura said: “Gracie’s treatment at Spires Cleft Centre has been fantastic. I had a really hard time with everything she has been through and getting my head around it all, and being in and out of hospital for various appointments is not what you expect to happen when you have a baby.

“Jane and her colleagues have been a great support over the last two and a half years, and Mr Swan has done an amazing job with Gracie’s palate repair and is so kind and really makes you feel at ease with everything. The whole team really are incredible and I just want everyone to know how great they are, and how much we all appreciate everything they have done and continue to do for Gracie.”

Jane Sibley, a nurse at the Spires Cleft Centre, said: “We’re so grateful to Laura and her family for their huge efforts to get more pumps here.

“It’s been a delight treating Gracie, and the fact that these breast pumps will enable many more mums to be able to give their babies their own breastmilk is fantastic news – having a baby is stressful enough, but with added complications from something like a cleft palate, it can be very difficult. Anything to make life a little bit easier is always welcome, and we owe Laura a huge thank you.”

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