Harley’s Climb for Coeliac UK
Harley inspires the Coeliac UK community to dig deep and scale greater heights to support others in need
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Hey Gluten Free Fam,
We have an inspiring story from the UK about a young girl named Harley. It’s told from the perspective of her father Glenn Hansen, detailing how his daughter’s personal struggles with coeliac disease led her to climb the mountain top to raise funds and awareness, figuratively and literally!
You can donate to Harley’s Just Giving page here and support a great cause from an inspiring young girl.
GUEST BLOG by Glenn Hansen
Shortly before Harley’s 5th birthday, we noticed she was getting quite pale with bags under her eyes. We thought at first she was just tired, perhaps from school or having a busy social life. As the weeks went by, her energy dropped and she began losing weight. My wife took her to the doctor who thought it may have been a dairy intolerance. Immediately we took her off dairy.
At this stage, Harley didn't want to do anything apart from lay on the sofa and watch TV. One day I asked her if she wanted to go to play in the park. She barely had the energy to say to me, "I just want to lay here and watch cartoons." This might not sound like much but this wasn't my little girl anymore, nothing on this planet would ever stop her going to the park!
She was such an energetic and adventurous girl. If she wasn't dancing, she would be running around, playing hide and seek or using me as a climbing frame. She was wasting away before our eyes and seeing her like that really broke my heart. There was a lot of back and forth to the GP, and within that time, she would barely eat, losing more weight and having even less energy. She also started having a number of bathroom accidents, especially at night time where her body was rejecting everything she was eating.
Damaging Symptoms Lead to Harley’s Coeliac Diagnosis
It was at this point where a GP said they thought it may be coeliac disease - something we'd never heard of. We of course looked into it and found out the culprit is gluten. What even is gluten? We'd barely heard of it before. I assumed avoiding gluten was nothing more than a diet fad. Learning about gluten, what it does, where it comes from and what contains it was a huge learning curve; it seems everything out there contains hidden gluten!
It seemed the sensible thing to do would be to take Harley off gluten completely. However, the doctor told us to keep her on a full gluten diet before all the tests are finalised, needing to take blood samples to inspect high markers of coeliac. If we decided to take her off gluten at that period, then the markers would be low and leave us without a diagnosis. It's very hard feeding your child food knowing the damage it causes, but we had to do it.
Eventually, a consultant confirmed coeliac disease as the diagnosis. Although officially he was meant to schedule an endoscopy and biopsy of her intestines, we all agreed not to put a 5-year old through that ordeal. That day we got the go ahead to take her off gluten completely, and 3 days later we started seeing glimpses of our little girl again. She was smiling more, laughing again and had more energy to run around and play.
Unfortunately, the condition had made her very anaemic and it took a good 6 months for her iron levels to pick up enough to where she wasn't fatigued easily. There were the occasional blood tests to check the coeliac markers and her iron levels, but she handled those needles like a champ!
Coming to Terms with Coeliac Disease and the Gluten Free Diet
We started the world of GF very naive. We didn’t understand which foods contained gluten or realise how much of an issue cross-contamination was and probably putting way too much trust in others. Nowadays, that’s just a normal part of life. It definitely has its challenges, especially when going abroad, and it definitely does restrict some of the countries we'd be willing to take her to.
On the other hand, it’s made days out cheaper, as we will always take a picnic instead of buying the overpriced food at venues. Sometimes venues like theme parks will tell us we're not allowed to take our own food in as they serve gluten free food. But as soon as you mention coeliac disease, they will just let us in, as most places cannot guarantee zero cross-contamination.
When cooking at home, we will tend to make all of our meals GF, with the exception of bread. Not only is GF bread about 4 or 5 times the price of a gluten-containing loaf, it also lacks a lot of quality and taste for what we have available. I do feel very sorry for the coeliacs that are forced to eat it!
“It’s reassuring to know there is a big community of fellow coeliacs out there when she goes out in the world on her own.”
Overall, Harley has been amazing with being gluten free. I think it helped she was diagnosed so young, allowing her to adapt quickly. There have been moments where she's been very upset missing out on things her peers can enjoy like food at her friends birthday parties (whilst she's having to eat from her own lunch bag that we've prepared for her), or sweets that have been handed out by kids at school. She understands why she can’t have these things, but it still gets to her at times.
To make this experience easier, we always have a cupboard full of GF treats. We swap out any questionable foods she takes from parties and even at Halloween time when she's been trick-or-treating. She's very good at reading food packets - looking for gluten, and questioning people on gluten free packaging. If she's not sure, she won’t eat it.
Climbing for Coeliac Awareness as Harley Reaches New Heights
In spite of many health setbacks, nothing could deter Harley from climbing for the Coeliac UK cause
The idea for the climb came from Harley’s own big sense of adventure. In 2024, I climbed Snowdon with my cousin. It's not something I had ever done before or even thought I was capable of; I just got to a point where I needed to push myself and see if it was something I could do. I did manage it (just about) and from telling Harley about it, she was determined she wanted to do it too. We spoke about the different routes, but she was adamant that she was only going to do one of the harder routes - the Pyg track.
Over the next few months, I kept testing the water to see if it’s something she really wanted to do. When she confirmed it was her goal, we brought up the idea of doing it to help others. Straight away, Harley wanted to do it to raise money and awareness for Coeliac UK.
Even though she’s a very fit child, (each week she goes swimming, dancing, acrobatics, and the occasional junior park run) I was worried what her stamina might be like. This is because I have seen mixed responses looking into stamina and fitness levels in coeliacs, even when they are on a gluten free diet.
We starting training for it late last year, mainly with longer and longer walks with her personal best (PB) at 8.6 miles, and introducing a lot of elevation training (well, as best I could in a pretty flat Essex). One of her dance friends’ mum is a personal trainer and even gave Harley some free sessions to get her ready, focusing on lots of squats and lunges, which Harley absolutely smashed!
I pushed my own training quite hard in the end as I was really worried about Harleys endurance. She was reaching the top, even if I carried her! In the end, I really didn't need to worry. Harley was a machine going up, and quite frankly, put me to shame with her stamina.
Coeliac UK Community Gets Behind Harley’s Great Cause
The response to Harley’s climb has been absolutely incredible. We never expected anywhere near this much attention. When we decided to fundraise, we were looking at a target of £150. To raise over £1,500 for Coeliac UK really goes to shows just how many people are supportive of the cause. The news post after the climb has had almost 10,000 reactions and over 400 comments.
I have read every single comment to Harley, and we are so honoured to have so many positive and lovely things written about her. There have been people from all over the world posting, so it really does show that this disease is a problem in every country and can affect absolutely anyone. Some of the comments have been a bit sad to read. Quite a number of people have told their story of how they have been undiagnosed for years (sometimes decades) which has caused lifelong issues and even permanent damage.
Harley is a bit too young to understand the reach that this has had at the moment, but I definitely feel a sense of connection with fellow sufferers on her behalf. It’s reassuring to know there is a big community of fellow coeliacs out there when she goes out in the world on her own!
Here are some extra resources and reports about Harley’s inspiring story, and how you can support the cause.
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