Eight-year-old Cai Davies attended a festive gathering with The Queen at Clarence House, along with his mum and his Roald Dahl Nurse Peter from Leeds General Infirmary.
The visit was arranged through Roald Dahl’s Marvellous Children’s Charity, of which Her Majesty The Queen is the Royal Patron.
Roald Dahl’s Marvellous Children’s Charity provides specialist nurses and support for seriously ill children and Cai was one of the children supported by Roald Dahl Nurse Specialists invited to help The Queen to decorate the Christmas tree at Clarence House. The children also enjoyed a surprise visit from Father Christmas and his reindeer, and there was a wonderful performance by The Band and Bugles of The Rifles.
Cai, who lives in Farley & Wortley ward, was diagnosed with Spinal Muscular Atrophy Type 2 (SMA) just before his 4th birthday. He is a cheeky, outgoing little boy who loves football and plays in a wheelchair football league.
His mum, Hannah, said: “I have had to give up work and become Cai’s full-time carer. It’s hard emotionally, but I am so grateful that I can be there for Cai whenever he needs me and to know that I can take him to any appointment or stay awake with him during the night whilst he’s poorly.”
Cai is cared for by his Roald Dahl Nurse Specialist Peter, who supports him and his family. Hannah added: “I didn’t realise how much it would affect us; everything was a fight before, a battle to get answers, but ever since Peter started a lot of that burden has been taken off. I feel less isolated and more settled. Roald Dahl Nurses honestly do just change families’ lives.”
Roald Dahl’s Marvellous Children’s Charity raises funds to establish specialist nurses to care for children living with some of the most serious and complex health conditions across the UK. The dedication and expertise of Roald Dahl Nurses reduce A&E visits, hospital admissions and consultant appointments, co-ordinating care and providing a vital lifeline to the whole family.
Louise Griew, Chief Executive at Roald Dahl’s Marvellous Children’s Charity, said: “We are so grateful to Her Majesty The Queen for inviting our charity to again be part of such a magical event. Being diagnosed with a serious and complex illness is immensely difficult for a child and their whole family, bringing significant stress and worry.
“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 provide vital specialist care to thousands of seriously ill children across the UK.”
