An appeal has been launched for a heroic act to save 17-year-old Evie Carter’s life following the diagnosis of an ultra-rare, life-threatening disease.

In April 2025, then 15-year-old Evie was preparing to take on her GCSE exams, thinking about college and what her future held. However, during this time, Evie became increasingly unwell, leaving her under emergency admission to Southampton Children's Hospital.

The Fareham youngster, described by her mother, Sally, as “empathetic, kind, caring, funny and clever”, was later diagnosed with atypical Haemolytic Uremic Syndrome (aHUS), a life-threatening, ultra-rare disease that only affects 1 in 500,000 people. The disease occurs when an overactive immune system creates tiny blood clots in small blood vessels, resulting in restricted blood flow to vital organs, causing Evie’s kidneys to fail.

placeholder image — Evie on dialysis | Evie Carter

It was later discovered that Evie’s condition had been caused by 2 rare underlying hidden genetic conditions: Cobalamin C Deficiency, a rare metabolic condition that affects 1 in 200,000 people and Complement Factor I Deficiency, which affects the immune system, impacting 1 in 1,000,000 people.

Evie remained in Southampton Children's Hospital for three months, missing her GCSE’s while doctors helped get her condition under control, forcing her family to adjust to major life changes, including restrictions, medication routines and building work on their house to ensure every element was clean and safe for Evie’s return.

After Evie returned home, the journey was far from straightforward. Her mother discusses “managing all of this at home was a lot! Evie got infections and/or overloaded on more than one occasion, which led to more hospital stays & more medications.”

Thankfully, Evie was awarded her GCSE’s, which led her to start college in September. Yet due to another hospital admission, which resulted in Evie having to switch to long-term haemodialysis three times a week at Southampton Children’s Hospital. The college failed to make the necessary changes mid-term to accommodate Evie’s needs, which unfortunately forced her to leave.

After many more tests, vaccines and scans, Evie was placed on the Deceased Donor transplant list, which her mother describes as “waiting for a lottery win.” Evie and her family currently face a 2-3 year wait for a donor.

During her stays at Southampton Children’s Hospital for her haemodialysis, Evie took part in music therapy sessions put on by local charity George’s Rockstars, where she worked alongside student music therapist Lucy Albery to create her own song.

Lucy discusses: “The song reflected not only her experiences but also her personality and inner world. It provided a space where she could be seen as more than a patient and become an active part of her own journey.”

Evie later recorded her vocals professionally at the SoCo Music Project’s studio, while Lucy produced all instrumental elements at home. The song is now being used as part of the NHS Living Donor Campaign to enhance Evie’s chances of finding a new kidney and having a chance at living a normal life.

Her mother states: “Evie just wants to do normal teenage stuff! Go to college, hang out with friends, learn to drive, sing & be happy - a transplant isn't a cure, but it would give her a much better chance of doing those things & would mean no more dialysis, hopefully for a very long time!”

Could you be Evie's hero!?

We are looking for a living kidney donor. You only need one healthy kidney to live a full life, but donating one would give Evie her entire life back.

• Blood Type Needed: B or O

• Age: over 18 & under 60 years old

• Generally fit & healthy

• With a BMI of less than 30

• The Process: Donating is a selfless act handled entirely by professionals. Your information remains confidential, and you will be supported every step of the way.

Interested in learning more?

Please email Specialist Nurse, Amy Shipperley at Guys & St Thomas's hospital [email protected] and mention you are enquiring for Evie Carter & you will be sent a health survey.