An 11-year-old girl who suffers from a rare condition which has left her heavily reliant on a wheelchair and crutches has inspired her school to support a charity close to her heart.
Megan Daly, who was diagnosed with a form of Juvenile Idiopathic Arthritis (JIA) last year, encouraged Westgate Primary School, in Bury St Edmunds, to don purple to raise awareness of the condition.
JIA causes painful flares of inflammation in a child’s joints and has had a ‘life changing’ impact on Megan and her family.
The event at Westgate Primary on Friday raised £385 for the charity JIA@NRAS which supports children with the condition and their families.
Megan organised the activity with close friends Jessie Davis and Ella Garrard. She also presented a school assembly about JIA and spoke about how it affects her.
Her mum, Sara Caley, 31 said: “She found it quite hard because she doesn’t like anybody to really know about her condition but she wants to help other children like her.
“It went really well but unfortunatley Megan deteriorated last week so she could only attend the day for three hours and had to attend West Suffolk Hospital to have three days of treatment.”
Megan was diagnosed in March last year after her mum took her to a GP with a swollen ankle. After tests at hospital she was diagnosed with JIA, which affects about 12,000 to 15,000 children in the UK.
Megan suffers from polyarticular juvenile arthritis and has received treatments which have not been as successful as doctors hoped.
A single flare-up can affect up to 25 of her joints.
Mrs Caley, of Bury, said Megan’s mobility had reduced ‘dramatically’ and she misses ‘an awful lot of school’ due to ill health, treatment and hospital trips.
“She used to be really into gymnastics and be really active but she doesn’t do PE anymore and she can’t run around,” she said. “It has taken a lot of her childhood away.”
Despite this, Megan has persevered with a smile and tries to be as involved as she can with her school and peers.
Mrs Caley said: “She’s a very smiley young girl and she’s very very brave. I’m really proud of her.”
Megan is currently trying a new treatment but it has yet to produce improvements on her joints.
Mrs Caley said JIA@NRAS has been a ‘big support’ and is always on hand to offer advice when needed.
She thanked Westgate Primary for raising funds.
Headteacher Jim Cleaver said they were ‘very proud’ of Megan, Jessie and Ella for organising the day.
He said: “They have presented an assembly, written letters to parents and organised a photographer; raising an amazing £385.
“JIA is a difficult condition for Megan to deal with but she does so with positivity and good humour. Westgate is pleased to have helped her support a charity from which she in turn receives support.”
Jessie raised £550 for JIA@NRAS earlier this year by asking for donations instead of gifts on her birthday.
Mrs Caley’s friend Toni Clark also held a fun day at the Day Lewis pharmacy on the Howard estate in aid of the charity. It raised £90 which will be matched by the pharmacy.