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Edinburgh Live
Edinburgh Live
National
Lucinda Cameron & Kris Gourlay

Edinburgh siblings with rare condition enjoy festive day out with Queen Consort

An Edinburgh mum whose two children both have life-limiting conditions said it was a "wonderful treat" after being invited to a Christmas event hosted by the Queen Consort in London.

Eilidh Curtis, five, and her three-year-old brother Cameron were invited to Clarence House along with Camilla and during the trip they saw reindeer, helped decorate the tree and met Father Christmas.

Both children live with Batten's Disease, a rare life-limiting condition, and are cared for by the team at Edinburgh's new Royal Hospital for Children and Young People.

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Michelle Small, their specialist nurse, nominated the family through Roald Dahl's Marvellous Children's Charity and they were invited to visit Clarence House alongside other children from across the UK, all of whom have serious health conditions.

Eilidh and Cameron's mother Sophie said: "We were shocked to be chosen and it was a wonderful treat for the whole family. It was Eilidh's first time on a plane and seeing London's Christmas lights was magical.

"Meeting the reindeer was a highlight for Eilidh who loves the sound of bells. She was very relaxed at Clarence House and we had to bring an extra suitcase home for all the gifts and treats the children were given.

"We first met Michelle in May 2021 and she has been with us throughout Eilidh and Cameron's diagnosis, and through all of our appointments and meetings.

"Michelle and the whole team at the RHCYP, including Dr Pilley, Ruth from palliative care, Kathleen, our physio, Pauline from occupational therapy and Katherine from speech & language are the most supportive team we could hope for."

As well as enjoying several festive activities, the children also sat down to a special lunch of sausages and mashed potato in the dining room at Clarence house and listened to a performance by the band of the Welsh Guards.

Families supported by Helen and Douglas House, which cares for terminally-ill children and their loved ones from Oxfordshire and the surrounding counties, also attended the event on December 7.

Camilla, patron of both organisations, was hosting the annual event for the first time since she became Queen Consort.

The Roald Dahl's Marvellous Children's Charity provides specialist nurses and support to seriously-ill children with some of the most complex health conditions in the UK.

Michelle Small, Roald Dahl specialist nurse at NHS Lothian, said: "Eilidh and her brother are two incredible children. It was so special to be able to attend Clarence House with them and their parents, and to be so warmly welcomed by Her Majesty The Queen Consort.

"Christmas is a magical time of the year but for families with a child who has a life-limiting condition creating special memories is even more important.

"From decorating the Christmas tree, to eating lunch with a Queen and visiting London, the Currie family not only had a truly wonderful day, but have precious memories to last for Christmases to come."

Louise Griew, chief executive at Roald Dahl's Marvellous Children's Charity, also expressed her thanks.

She said: "We are extremely grateful to Her Majesty The Queen Consort for once again inviting our charity to be involved in such a magical event.

"Being diagnosed with a serious and complex illness is immensely difficult for a child and their whole family. This day provides such a special memory for some of the heroic and brave children we support.

"It also recognises our marvellous Roald Dahl nurses, who this year delivered life-changing care to thousands of seriously-ill children and their families across the UK."

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