143

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$2,850

raised of $2,000 target from 72 people

Laura , Ben, Amelia, Mike & Barbara is raising $2,000 for Spires Smiles
About
Gracie’s Story On October 28th, Laura Edginton, Ben Edginton, Amelia Edginton, Barbara Compton, Sophie Baggaley & Mike Baggaley will be participating in a 13000ft Skydive to raise money for Spires Smiles a charity very close to our hearts!. As some of you will know, When Gracie Edginton ( Ben & Laura's Daughter ) was born on the 4th October 2015 at the JR hospital , Oxford , she was diagnosed with Pierre Robin Sequence Pierre Robin sequence is a set of abnormalities affecting the head and face, consisting of a small lower jaw (micrognathia), a tongue that is placed further back than normal (glossoptosis), and an opening in the roof of the mouth (a cleft palate) She was immediately assessed by doctors after there were concerns that she was having huge difficulty breathing due to the obstruction caused by her tongue. Gracie was taken straight to the High Dependency ward where she was closely monitored 24/7 with both parents by her side. The difficulties where unexpected and extremely hard for Ben & Laura to cope with. When Gracie was stable, a tube was placed through her nose and into her belly so that she was able to feed. Babies born with a cleft palate are unable to create any suction and therefore are unable to breastfeed or bottle feed. Shortly after Gracie’s birth The Spires Cleft Centre at the John Radcliffe Hospital was notified and arranged for Cleft lip & palate specialist to visit the next day. After 3 days in the High Dependency ward she was moved into the Low dependency ward for further 7 days where Gracie and her parents received continues support and regular visits from there Cleft Nurse Specialist. The nurse provided them with specialist cleft bottles and all the equipment required making sure that they could feed Gracie at home. After Gracie was discharged, the nurse made regular home visits to make sure that she was making progress; she supported the family until she was confident that Gracie was able to feed without tubes and that she was gaining weight quick enough. As continued support, the cleft nurses are always available by phone and for home visits - they will continue to support the family through the next few months and Gracie’s childhood as she undergoes a number of operations to repair her cleft palate. *The Charity* The Spires Cleft centre still provide Ben, Laura and Gracie and other families & children born with Cleft lip & palate’s with huge support – Helping with bottle & tube feeding, weaning advice, speech therapy, home visits, hospital appointments, information & support through surgery and much more. Spires Smiles is an independent, voluntary, non-profit charity set up to support the Spires Cleft Centre at the John Radcliffe Hospital Oxford and the Salisbury District Hospital and the patients and their families who are treated there such as Gracie. The money we raise for the our skydive will support the Spires Cleft Centre at the John Radcliffe Hospital and will help them towards equipment & research that is currently needed. All of us are extremely grateful that such support is available for children like Gracie and we would like to thank them by raising lots of money for Spires Smile!! We would also like to say a MASSIVE thank you to those who have already donated  and as it’s a small local charity, we will be able to tell you exactly where your money goes!

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Spires Smiles is an independent, voluntary, non profit charity set up to support the Spires Cleft Centre at the Salisbury District Hospit...

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