Imagine a toddler whose entire life has been a battle for survival, facing not one but two life-altering transplants before the age of three. This is the reality for Etta Cartmill, a brave little girl from Bessbrook, County Armagh, whose story is both heart-wrenching and inspiring. But here’s where it gets even more remarkable: Etta and her older brother, Olly, share an incredibly rare genetic condition called TTC21B—so uncommon it doesn’t even have a widely recognized name. This condition has led both children to endure kidney failure, thrusting their family into a world of hospitals, surgeries, and unwavering hope.
Etta’s journey has been particularly grueling. After spending much of her short life in hospital wards, she received a life-changing liver transplant last September. The surgery was intense—lasting 11 hours—and required her to be ventilated, with her abdomen partially covered in mesh due to swelling. Yet, against all odds, she emerged with a healthy liver and a newfound zest for life. Her mother, Dionne, describes the transformation vividly: ‘From the moment Etta got the liver transplant, she’s absolutely thriving. Her personality is shining through like never before.’ Before the transplant, Etta was in constant pain, crying incessantly, and impossible to soothe. Dialysis sessions were particularly harrowing, with Dionne often climbing into her cot to hold her, only to feel her daughter’s agitated push-and-pull as she struggled to find comfort.
And this is the part most people miss: While Etta’s kidney condition was known from birth, the need for a liver transplant came as a complete shock to the family just a year ago. Now, as she prepares for her second major surgery—a kidney transplant—Dionne has discovered she’s a perfect match. ‘I’m absolutely delighted,’ she shared. ‘I’m fit and healthy, and I can’t wait to do it.’ This act of maternal selflessness follows in the footsteps of Olly’s transplant in September 2023, where their grandmother Michelle donated a kidney to save his life. At just 13kg (29lbs) during the surgery, Olly has since blossomed into a vibrant, energetic boy, described by Dionne as ‘full of life, full of ideas, and doing fantastic.’
The Cartmill family’s resilience is nothing short of extraordinary. Dionne and her husband, Neil, have juggled countless trips to Belfast for Etta’s dialysis—up to five times a week—along with specialist care in Birmingham. Their journey has been marked by both unimaginable stress and profound gratitude, particularly for the anonymous donor whose liver now gives Etta a chance at a healthy future. ‘We were very fortunate,’ Dionne reflected, ‘and now it’s my turn to give back.’
But here’s the controversial question: With such rare conditions requiring multiple organ donations, how do we ensure equitable access to life-saving transplants for all families? And what more can be done to support families like the Cartmills, who sacrifice so much for their children’s survival? Share your thoughts in the comments—this conversation needs your voice.
