Hello! My name is Sophie, I’m 26 years old & I have two rare digestive conditions. Achalasia & Gastroparesis. I had Achalasia surgery on my Oesophagus in 2022 & unfortunately a while later I developed severe Gastroparesis & my life changed forever. It is thought that my first operation very likely contributed to the development of Gastroparesis. Gastroparesis is an invisible, chronic illness, with debilitating symptoms.

Gastroparesis means my stomach muscles are paralysed, so I’m unable to process & break down food as normal, resulting in severely delayed stomach emptying.

In 2024, this led me to have a 3 stone weight loss, malnutrition, chronic fatigue, excruciating stomach pains, nausea and excessive bloating. My life was flipped upside down. I had months off sick from work, my wedding was almost cancelled, I couldn’t see friends or family, walk my dog, & some days I couldn’t even dry my own hair after having a shower due to severe fatigue. For months I was spending majority of my days in bed & even now I have to rest so much compared to a healthy person. All my life choices are currently taken away from me & I never know what each day will bring. It has prevented us from starting a family, progressing my career & travel is now also super complicated. I struggle with socialising normally, and going out to a restaurant is incredibly daunting.

After exhausting all available treatment options with no success, in March 2025, I was admitted to Oxford University Hospital & I had a Jejunostomy Feeding Tube inserted into my small bowel via a stoma site & I feed every night whilst sleeping. This has got me back to a healthy weight & enabled me to get back to work. In one of the photos above, you can see my weight difference in a year. I never thought in my mid twenties, I would have to plan every decision I make so strategically, when everyone around me can do normal things without even thinking about it.

However I still really struggle with symptoms and generally just living my life. My body & my mind are constantly stuck in survival mode. If I have a good day and manage to socialise/do something fun, it can take days to recover. Most days I only eat one small meal, and some days are better than others, but my body cannot function without my feeding tube.

There is an operation available to me in Essex, where a gastric pacemaker can be fitted to my stomach wall, to artificially make my stomach muscles contract to digest/break down food. This won’t cure my condition, but should make a massive difference and give me my life back. If it’s successful, my feeding tube can be removed and my symptoms will be majorly reduced. This operation is a minimum cost of £20,000, and there are only a handful of specialists in the country who can perform this. The NHS are prepared to fund me to be tube fed for life, costing a minimum of £60,000 over my life time. But, they will not fund this surgery due to its rarity. If I lived in Wales, Scotland or Northern Ireland, the surgery would be fully funded without question.

Any money raised will help us to make this a reality, and will not only help with the cost of the surgery, but also travel to and from Essex, & accommodation for my husband to stay nearby. I will need very regular follow ups, following the surgery to get the settings correct for my body, so it will help with the cost of this too.

If we manage to raise the funds, anything left over after my surgery & appointments will go to the GUTs UK & Achalasia Action charities. They do incredible work to raise awareness for digestive conditions & help with research of these rare conditions to hopefully, one day, find a cure.

Myself & my family have started saving and will continue to do so, but if you’re able to donate, even the smallest amount would mean the world to me and my family. Every contribution brings me one step closer to the surgery that could give me my life back, and I’m truly grateful for any support you can offer.

Thank you so so much for reading & supporting me on this journey. Soph ❤️