Hi, my name is Rhiannon.I’m 29 years old, a mum to a young daughter, foster my brother and a counselling student.I’m fundraising to access an independent gastrointestinal specialist consultation, further investigations and a clear treatment plan.

Alongside my gastrointestinal illness, I live with hypermobile Ehlers-Danlos syndrome , a connective-tissue disorder that affects my joints, causes chronic pain and can involve several different systems throughout the body. I also experience symptoms of autonomic dysfunction.People living with hEDS will understand how difficult it can be to receive joined up care when symptoms cross several medical specialties and no single team appears able to see the complete picture.

I have experienced gastrointestinal problems my entire life, but my health has the last while has deteriorated severely.I became unable to tolerate solid food, lost a significant amount of weight , became malnourished and have now been in hospital since June 2026.I currently depend on intravenous nutrition through a central line because repeated attempts to provide enough nutrition through feeding tubes have been unsuccessful.

Testing has shown severely delayed movement through my digestive system. During capsule testing, the capsule remained in my stomach for at least eight hours and took approximately two weeks to pass completely. I experience severe nausea, vomiting, abdominal pain and difficulty tolerating oral or enteral nutrition.

Despite these findings, there is still considerable uncertainty and disagreement about the cause of my symptoms and the best way forward. I desperately need my records and results reviewed by an independent specialist with expertise in complex gastrointestinal motility disorders, including how these problems can present alongside conditions such as hEDS and autonomic dysfunction.

The funds raised will help cover:

• A private specialist consultation and full review of my medical records

• Appropriate gastric and whole-gut motility investigations

• Follow-up appointments and treatment recommended by the specialist

• Travel and accommodation if I need to attend a specialist centre elsewhere in the UK

I initially hoped to access wireless motility capsule testing, often called the SmartPill test. As the original system has been discontinued and availability is now limited, donations may instead fund the most appropriate alternative investigations recommended by the specialist.

The hardest part of this illness isn’t only the pain, procedures or inability to eat, it is the time it has taken away from being an ordinary mummy. While other families are sharing meals, doing the school run, enjoying days out or simply cuddling together at bedtime, I have spent months in a hospital room watching my daughter grow through photographs, video calls and short visits.Children should not have to become accustomed to visiting their mummy in hospital. More than anything, I want to be at home making ordinary memories with her again, the kind most people understandably never imagine could be taken away.

I’m not expecting an instant cure. I’m simply asking for the opportunity to receive an independent assessment, obtain a safe evidence-based treatment plan and hopefully regain enough stability and quality of life to return home to my family.

Asking publicly for help is incredibly difficult for me. Any donation, no matter how small, would mean more than I can express.If you cannot donate, sharing this fundraiser would also make a huge difference.It may help this reach someone who understands hEDS, gastrointestinal dysmotility or the heartbreak of being separated from their family through illness.

I will provide updates and remain transparent about appointments, costs and how the donations are used.Thank you so much for reading my story and helping me take a step towards answers, appropriate care and getting back home to my little girl.