Don't give me gifts for birthday. . give money to Sick Kids

Published on Tuesday 22 April 2008 10:35

LITTLE Ellen-Rose O'Neill couldn't wait to receive all her tenth birthday presents.

For the youngster – who is often in chronic pain from a rare genetic condition – gave up toys, books or clothes in exchange for donations to the Sick Kids Hospital.

Ellen-Rose suffers from benign hypermobile syndrome, which causes her joints to be abnormally flexible, and she has been treated at the Sciennes hospital since she was five.

She asked her friends and family not to give her presents at her birthday party on April 12, raising 400 for the Sick Kids Foundation. She presented the cash in person yesterday.

Mum Sharon O'Neill, 43, who is a full-time carer for Ellen-Rose, said the idea came to her daughter as she was writing her party list.

She said: "We got up to about 50 people and she realised that with all those people there would be loads of presents. She said 'Mummy, I don't need anything'.

"She felt that she had everything she needed so we thought it would be a great idea to ask her friends to donate a small amount to the Sick Kids, since they have been very supportive with her condition."

The money will go towards comfortable chairs for visiting parents in Ward 1.

Hypermobile syndrome is a genetic condition which means joints move easily beyond their normal range.

As a result, the muscles have to work much harder and this can cause chronic pain and spasms.

Mrs O'Neill, from Duddingston, said: "She has always been very bendy. She can do things like touch the floor with her hands and feet flat on the ground and can bend her little finger back to touch the inside of her wrist.

"But this also causes her terrible pain. When she was five years old she was screaming with sore bones – in her fingers, wrists, knees and ankles. She was on the floor crying and screaming. It was very distressing."

Ellen-Rose saw several specialists over three years as a young child, before doctors finally diagnosed her condition.

For most sufferers, the condition improves as they grow older. There is no cure, only short-term remedies such as painkillers.

Despite regular treatment at the Sick Kids, Mrs O'Neill said Ellen-Rose still had episodes of pain that could last through the night. She said: "It's usually in the evenings and the winter when it is particularly bad."

She added: "I am very proud of her. When children spend time in hospital, it is amazing how much they take in. She saw a lot of people less fortunate than herself and she wanted to help them."

Rachel McKenzie, communications fundraiser at Sick Kids Friends Foundation, said Ellen-Rose was "an inspiration".

She said: "Everyone knows her here. This just shows the other children what they can do."