Easter bunny drops in to visit the metabolic Easter party
Posted on Thursday 13th April 2017
Oliver Jolliff and his mum at this year's Easter party (top left), Oliver and his dad at the party in 2016 (top right), metabolic team members with the Easter bunny (bottom left), a children's entertainer at the party (bottom right)
Children with rare metabolic conditions at Evelina London were treated to their annual Easter party with a twist.
Every year the inherited metabolic diseases team at Evelina London throw an Easter party for patients who can’t normally eat chocolate because they have to stick to low protein diets. The team want to make sure that the families they treat can have fun and join in the celebrations. Children like Oliver Jolliff from Dorset enjoyed entertainment, face painting and even a visit from the Easter bunny.
Oliver’s mum, Hannah Jolliff, said: “Oliver was born at St Thomas’ and we will always be grateful to Evelina London for saving Oliver’s life and taking such great care of us. The metabolic team are lovely, friendly and always at the end of the phone. Oliver is a bit of picky eater but they’re really understanding and supportive. We really enjoy the Easter party because we get to see the metabolic team and meet other families who have children with a similar condition to Oliver.”
Oliver is a patient at Evelina London and has come to the Easter party with his family for the last two years. He was born at St Thomas’, as it was suspected he could be born with a metabolic condition and would immediately need specialist support. Tests at Evelina London confirmed that Oliver had Carbamoyl Phosphate Synthetase Deficiency (CPS1), an extremely rare inherited disorder affecting approximately one in a million people. Children with this condition usually have extremely high ammonia levels and are at risk of damage to the brain if they are not treated quickly.
Oliver was monitored from birth and diagnosed at a few days old. He received specialist care immediately and the ammonia was well controlled with a low protein diet and medications. Oliver spent a lot of time in and out of his local hospital in the first year of life with high ammonia levels. He was well looked after locally with assistance from the metabolic team at Evelina London. He had a liver transplantation at 11 months of age and is now doing very well, no longer needing a low protein diet.
Tanya Gill, clinical nurse specialist in the inherited metabolic disease team said: “Easter and other celebrations can be a tricky time for children on a low protein diet and their families. Unlike Oliver, some children will always need to eat a low protein diet and protein is found in many foods including meat, fish, egg, cheese, bread and many other things, including chocolate! It’s important for our families to have fun and join in celebrations like everyone else.”
Dr Roshni Vara, consultant in children’s inherited metabolic diseases said: “Rare metabolic conditions require specialist treatment with a strict diet and medications to prevent the build-up of toxins in the bloodstream that can cause damage to the brain and other organs. Children and families are cared for by a large team and reviewed regularly throughout their lives to ensure the best treatment and outcomes.”
Read more about the inherited metabolic diseases service at Evelina London.