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Guts UK is proud to be part of the nationwide Remember A Charity in Your Will Week (8–14 September). Now in its 25th year, the campaign brings together charities across the UK to highlight just how powerful a gift in your Will can be in supporting the causes you care about.

September is also Achalasia Awareness Month, shining a light on this rare oesophageal condition that makes swallowing food and drink extremely difficult. Affecting around 1 in 100,000 new patients in the UK each year, achalasia is a condition that urgently needs more awareness, research, and support.

To mark both of these vital campaigns, we’re sharing the story of eight year old Alia, as told by her mum, Agnieszka. Diagnosed as a baby, Alia has grown up learning to live with the challenges of having the rare digestive condition, achalasia.

Alia’s story also demonstrates the extraordinary power of community and the importance of charities like Guts UK, which advocate for change. Through Guts UK, Alia met another young girl, Grace, who also has achalasia. In support of Alia and Grace, their parents attended a Guts UK event at St James’s Palace, where they shared their experiences with supporters and with Her Royal Highness Princess Alexandra. A moving moment that showed no family should face these challenges alone.

With a pledge of a gift in your Will to Guts UK, we can continue funding research and provide vital support so that children like Alia and Grace never face these challenges alone.

Alia’s diagnosis with achalasia: 

Alia lives in Chelmsford, Essex, with her mum Agnieszka and dad Cassius, their family life is lively and full of adventure. Eight year old Alia loves climbing, swimming, and anything to do with Disney’s Stitch. She’s happiest playing with friends, exploring the outdoors, and despite difficulties with swallowing, her mum describes Alia as a real ‘foodie’.

Talking about her first symptoms when Alia was just a baby, Agnieszka said: “When we started weaning her at around seven months, she just couldn’t keep any food down, even milk was a struggle. We were told by doctors that it was reflux, but nothing helped. She began losing weight, losing her energy. It was heartbreaking.”

By the time Alia was one year old, after months of hospital visits and worry, she was finally diagnosed with achalasia. Since her diagnosis, Alia has undergone several balloon dilatations to help stretch the muscles of her oesophagus. Though her symptoms have improved over time, the condition remains a constant challenge.

“Even now at eight years old, every meal carries a risk.” Agnieszka explains. “Sometimes food gets stuck in her oesophagus and she has to bring it back up. It can happen once or twice a month, depending on what she eats. Bread, pasta or bigger chunks of meat can be difficult. She’s learned how to manage it and she’ll excuse herself, go to the bathroom, and deal with it quietly. Then she comes back, sits down for a few minutes, and carries on as if nothing’s happened.”

As Alia has grown older, navigating education has been challenging. “At nursery and school, teachers often mistook her regurgitation for food poisoning. We’d get phone calls asking us to pick her up,” Agnieszka remembers. “We had to explain again, no, this isn’t contagious, it isn’t food poisoning, this is her condition. Once they understood, they were supportive, but it was exhausting to repeat the story every time she started somewhere new.”

Reflecting on the future, Agnieszka said: “Right now, she takes it in her stride, but I know when she’s a teenager she might feel embarrassed about being sick in front of her friends. That’s why awareness matters so much. Children like Alia deserve understanding and support.”

Finding friendship through Guts UK

Explaining the family’s connection with Guts UK, Agnieszka said: “Before Guts UK, we felt completely alone. Even among doctors, there wasn’t much knowledge about achalasia. Then, through Guts UK, we met another family, Steve and Vanessa, whose daughter Grace also has the condition. For Alia, meeting someone her own age with the same symptoms was priceless. She no longer feels like the only one.”

The two girls quickly bonded and found comfort that they weren’t alone in navigating food struggles, hospital visits, and questions from friends. Their parents, too, found relief in sharing experiences and advice. “It was really beneficial for the girls, but also for us as parents,” Agnieszka reflects. “We could finally talk openly with people who understood.”

A very special day at St James’s Palace

In 2022, both families were invited to speak at a Guts UK event at St James’s Palace, attended by HRH Princess Alexandra. For both the girls’ parents Agnieszka, Cassius, Vanessa and Steve, it was an unforgettable moment.

“To stand there and share our story, to be seen and heard, was incredibly special,” says Agnieszka. “We were nervous, of course, but we knew how important it was. Achalasia is rare, but by talking about it, we can help raise awareness not just for Alia and Grace, but for all those living with digestive diseases.”

Why gifts in Wills matter

For Agnieszka and her husband Cassius, who both have backgrounds in the charity sector, the value of legacy giving is clear. “We’ve both worked in charities, so we know how vital gifts in Wills are. They provide sustainable funding that helps charities plan for the future. Without them, so much important research and support simply wouldn’t be possible.”

She adds: “The digestive system is just as important as any other part of the body, but it doesn’t get the same attention. Guts UK is changing that, and gifts in Wills make sure they can continue. For us, Guts UK has been there when we needed them most and we want other families to have that support too.”

Alia herself is also a keen fundraiser for Guts UK, with Agnieszka revealing, “For her birthday party, Alia asked for donations to Guts UK instead of presents. She raised around £100 and handed out little tattoos and stickers to her friends. It meant so much to her to give something back.”

Pledge your support to Guts UK today, in support of children like Alia and Grace.

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