Helping her big sister with a big challenge

Helping her big sister with a big challenge

Helping her big sister with a big challenge

Helping her big sister with a big challenge

First published in News

WHEN it comes to fundraising little Lilly Deakin cannot be faulted for her efforts for big sister Eleanor.

The five-year-old, of Harlyn Gardens, Penketh, wanted her own event to help raise money for a charity helping youngsters like her sister with ME.

Their mum Karen said: “She loves her sister and I had to explain what my friends were doing by completing a charity walk up Snowdon.

“One day she turned around and said she wanted to raise money because she wanted to buy some energy for Eleanor.

“We decided to do this little walk and it just escalated from there, we rung around a few businesses who offered prizes and helped us out.

“We wanted to make an event for Lilly and wanted to raise £100 but we managed to raise more than £300.”

Along with the charity walk organised by Lilly some of the parents at her school - St Vincent’s Catholic Primary School - also tackled climbing Snowdon and between the two have raised more than £1,000 for the Association for Young People with ME.

Eleanor, aged 16, has a severe from of the condition, which is also known as chronic fatigue syndrome.

“It’s the second time she has had it,” added Karen, aged 42. “She had it when she was 10. Before she was very sporty, almost a black belt in karate, played football and took three dance classes.

“She had a headache for two months and she had to have an emergency lumber puncture due to pressure on her brain. She recovered from that but then started to get poorly. After two months she was diagnosed with ME.

“She did start to get a bit of normality again but then in September 2012 symptoms started again.

“She started going down hill and by Christmas that year was worse. From August last year she has only left the house six times for hospital appointments.”

Every day acts most take for granted such as talking to someone or sitting up leave Eleanor exhausted.

When the condition worsened she initially tried to continue with her life at St Gregory’s Catholic High School.

But even home schooling has become too much for her.

Karen added: “It’s like a vicious circle because she is lying in bed all the time her legs and arms ache, she also can’t control her temperature.

“She recently suffered from bad vertigo and she is very noise sensitive.

“It is hard, since she was little all she wanted to do was be a teacher in a school for children with learning disabilities. But the school have been so supportive to us and even sent a careers advisor to see her when she couldn’t go in.”

But with the help of Lilly and others the family are hoping their money will go towards research into the treatment of the condition which currently has no cure.

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