Etta’s epic charity cycle challenge 

A SIX-YEAR-OLD girl who has coeliac disease is aiming to cycle 100 kilometres to raise money for a charity that supports people with the condition.

Etta Connor, who lives in Brookwood, is hoping to raise £1,000 for Coeliac UK, while raising awareness of the serious autoimmune condition.

Etta Connor out for a ride with dad Gary and mum Caroline

She is being sponsored on her rides to and from school and on bike trips with her parents, Caroline and Gary, which will total up to her target distance.

Etta’s fundraising effort is part of Coeliac UK’s #ShineALightOnCoeliac challenge, which has the theme of 100, reflecting that one in 100 people in Britain has coeliac disease.

“As soon as we found out about the fundraising campaign we were eager to be involved,” said Caroline. “We see this as a great opportunity to help raise awareness and educate others on this disease whilst also raising money for this very important charity that has supported us.

“We love a family challenge and an event we can do together.”

Etta said: The best thing about cycling is it’s fun. Definitely more fun than going to school in the car. I love my new bike because it’s got gears, and it’s pink!

“Sometimes being coeliac is hard because I can’t have the same food as my friends.”

According to Coeliac UK, only 36% of people who have the disease get a correct diagnosis and this takes 13 years on average from the onset of symptoms. 

There is no cure for the condition, but it can be controlled by a strict gluten-free diet for life.

Etta had suffered with a bloated stomach since she was a baby but this was dismissed by doctors. Two years ago, the bloating got worse with tummy pain and she became increasingly tired and very pale. A blood test last summer confirmed she had coeliac disease.

Caroline said Etta has benefitted from eating gluten-free food but this has meant much more than being careful about what she eats and has forced huge changes on the whole family.

“Lots of people will say that there is a lot of gluten-free food and if you have a gluten intolerance that’s great, but not for somebody with coeliac disease,” Caroline said. “The danger of cross contamination means that food has to be prepared in a completely separate kitchen.”

“Etta is eligible for free school meals but the school said that, while they could order gluten-free food, they can’t guarantee the kitchen is gluten-free. So, we get up every morning and prepare hot food for her to take in.

“Every birthday party means us buying a birthday cake so she can join in. We check what prizes are being given for games and we’ll bring something for Etta.”

Caroline and Gary have made big changes at home. “We made the decision for Etta’s mental health that our whole house will be gluten free so that there is one place she can enter where she knows she can eat whatever she wants and doesn’t need to wipe down a table before she eats,” Caroline added.

Caroline said Etta has embraced the changes and was helped in her understanding by reading Gluten Free is Part of Me by Laurie Oestreich, aimed at children with the condition.

“She has made it really easy for us all to get on board with it as she has got on board with it herself. A lot of it is to do with when you are in pain because of something, you quickly want to understand what’s going on.

“While it has been a huge challenge and a difficult year as we adjust, we are so grateful we now know Etta needs a gluten-free diet and she is feeling and looking so much better as a result.

“She does still experience the symptoms but has made significant progress and of course a lot of our information and support is coming from Coeliac UK. As parents, we want to create positivity around Etta’s diagnosis and the huge lifestyle change it has meant for the whole family.”

* TO support Etta’s 100km – 62-mile – cycle challenge

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