A West Island couple is looking for a living kidney donor to radically change their two-year-old daughter’s life. Carmella was diagnosed with congenital nephrotic syndrome, a rare, life-threatening disease characterized by excessive protein in the urine. “As a result, she has a hard time growing, and she’s immune-compromised,” said her father, Justin. CTV News has agreed not to use the family’s last names as they say they have received unsolicited messages online. Justin says they first saw signs of the illness shortly after she was born. Her body would swell, and she wasn’t gaining weight. After being rushed to the emergency room, Carmella was diagnosed with the syndrome. Since then, the couple says they’ve had to learn how to treat her condition. At two-years-old, Carmella weighs 8.2 kilograms (18 pounds) and can’t walk. She requires extensive physical therapy and must be fed through a feeding tube. Because her body doesn’t absorb enough protein, her caloric intake is much higher than her peers. “Just providing her medicine and getting her to eat sufficient calories for her to grow, it’s a full-time job,” said Justin. He says his wife has been forced to stay at home full-time because Carmella is immunocompromised and can’t go to daycare. Her doctor, Montreal Children’s Hospital pediatric nephrologist Dr. Indra Gupta says the current situation is unsustainable. “Because of this birth defect, it is very difficult to correct it. In fact, the only way you can correct it is by giving her a new kidney,” she said. Due to her age, Gupta says the best option would be a living donor, since the kidney would have a longer lifespan than one from a donor who has passed away. “Within her lifespan, she would inevitably need a second kidney at some point in the future. So, that’s why we try to get the best kidney we can,” she explained. A qualified living donor must have type A or O blood, be in good overall health, with a BMI under 35 and preferably under the age of 45. They should also not smoke or drink excessively. The family has started a Facebook group to spread the word and, hopefully, find a donor. They say they also want to encourage more people to sign the back of their Medicare cards to consent to becoming an organ donor. Testing to find a match for Carmella is expected to begin in the coming months. The process can take up to year, and three people at a time can be tested. Right now, Carmella’s parents are working on getting her strong enough to receive an adult kidney, since she first needs to be a certain weight and height. “That person’s out there, you know, and they’re just waiting to change her life for the better,” said Justin. “We can’t wait.” Here is more information on how to become a donor.
