Family can finally begin to enjoy life
Mar 9 2010 by Karen Wilson, The Journal
WHEN James and Elly Chapple’s first child Ella was diagnosed with a rare disorder that affects one in 800,000 babies, their lives were turned upside down. Now they’re determined to raise money that will help Ella’s condition. KAREN WILSON hears their story.
“It’s enriched our lives in a fantastic way even though it’s taken us to the depths at the same time,” says Elly.
“Things become less important that were important before. You value the simple things in life.
“When your child has screamed for six hours and you’ve taken her out for a walk and done 1,000 rocks on your knee, it teaches patience.
“There have been times when I’ve wanted to bolt out of places with Ella because people look at us. It can be mortifying and upsetting when she has a meltdown and people stand and stare. So I don’t judge any more. I look at any child with total compassion.”
James adds: “She’s one in a million. Because of the way she has to touch everything, she’s got so much faith in people. She is the most loving child and always wants to hug you.
“Everybody who meets her immediately falls in love with her.”
How you can help
Part of Ella’s condition is Aniridia (having no iris) which causes partial blindness and affects one in 96,000 newborns. Elly and James are raising money for Moorfields Eye Hospital in London, backed by Aniridia UK, for research into curing childhood Aniridia.
“It’s something I believe could be cured in this day and age,” says Elly. “Especially with the stem cell technology that’s out there.”
By creating a sub- group within an existing charity, James and Elly will have no admin costs and so all the money raised will go directly to research.
Friends and family have already started raising money. James is taking part in a canoeing, biking and running event, Elly’s sister is climbing Ben Nevis with her netball team, her cousin is doing a sky dive and her brother is climbing the three peaks. They also plan to hold a Fairy Tea Party at Alnmouth and want others to hold similar events around the region.
For more information visit www.cureaniridia.co.uk or donate online at www.justgiving.com/Shine-the-Light-on-Aniridia
Alternatively email Elly at ellychapple@googlemail.com
