An Island lad and his father joined Roald Dahl’s Marvellous Children’s Charity at Clarence House in London yesterday (Wednesday) to help decorate the Christmas tree and enjoy an afternoon tea.
Roald Dahl’s Marvellous Children’s Charity is a lifeline charity for seriously ill children and their families. The children are affected by serious illnesses, including severe epilepsy, sickle cell anaemia and haemophilia.
Yesterday’s event saw the announcement that Her Royal Highness The Duchess of Cornwall has joined the charity as its Royal Patron. Her Royal Highness was able to meet 5 of the Roald Dahl specialist nurses from around the country.
Amongst those decorating the tree was 9-year-old Ewin from Sandown and his dad, Bob.
Ewin was born with severe haemophilia A, meaning that his blood lacks an essential protein needed for blood to clot.
As a young baby he developed a spinal cyst with a related bleeding episode and was unable to move his arms and legs. He was admitted to Southampton General hospital for specialist management involving an intensive medication regime, physiotherapy and nursing care.
The high level of haemophilia medication Ewin was taking caused an antibody to develop in his blood that rejected the treatment – an alternative was needed. This was a very stressful time for Ewin and his family and they required a lot of support from Trish Bell, a Roald Dahl children’s nurse of 8 years.
Ewin made steady progress and after a period of time he made a complete recovery. He was able to resume his treatment when the antibody disappeared and has continued to receive the medication on alternate days since then. He is now an active child who enjoys football and fishing and he is learning to give his own treatment into a vein in his arm.
Jane Miles, CEO of the charity said:
“We feel honoured in welcoming Her Royal Highness as Royal Patron of the Charity. Everything we do in the charity is directed towards making life better for seriously ill children in the UK. The Duchess of Cornwall’s support will make a huge difference in raising awareness of this work and will strengthen our efforts to ensure these children live the fullest lives possible.”