Latest news with #AlagilleSyndrome
CTV News
06-08-2025
- Health
- CTV News
‘High hopes' of liver donor for ill 18-month-old Airdrie boy
An Airdrie couple is spreading the word about live liver donations as they await a donor to save their toddler's life. An Airdrie couple is spreading the word about live liver donations as they await a donor to save their toddler's life. 'Having a donor transplant for Colby would be life-changing,' said the toddler's mother, Stephanie Crofts. Colby Crofts is an 18-month-old with a rare genetic condition called Alagille syndrome that impacts his organs, primarily his liver. He has been in hospital several times due to liver failure. His latest stay started in June. 'We spent the last almost nine weeks in hospital. It's been pretty tumultuous, I would say,' his mom said. 'It's been hard watching him get so sick.' An Airdrie couple is spreading the word about live liver donations as they await a donor to save their toddler's life. An Airdrie couple is spreading the word about live liver donations as they await a donor to save their toddler's life. It is a difficult time for the toddler, his mom who stays with him at Alberta Children's Hospital (ACH) and his dad and three sisters who have been staying nearby at Ronald McDonald House. 'It's been a struggle for the family. We have high hopes and are believing things are going to change,' said his father, Mike Crofts. Right now, Colby is not able to walk or stand, has to take several medications and is always hooked up to a machine. His doctor says Colby needs a liver donation. 'It would be the difference between life and death for him,' said Dr. Simon Lam, who works in the Pediatric Gastroenterology Clinic at ACH. 'The priority is to get an organ to make sure we can get Colby back on track.' Lam says it is 'night and day' when children who need liver transplants get them, allowing the children to finally be able to grow, develop and live like kids. Colby was officially listed for a liver transplant on July 3, and his family is hoping the right donor comes along soon. It could come from someone deceased or a live donor who has surgery to remove a piece of their liver. An Airdrie couple is spreading the word about live liver donations as they await a donor to save their toddler's life. An Airdrie couple is spreading the word about live liver donations as they await a donor to save their toddler's life. His family says the living option does come with advantages. 'We could have a known time; we could book it during daytime (and) we could make sure the surgeons are all prepared and it's not an emergency,' Colby's mom said. She says she never knew living donors could give a piece of their liver. 'The liver is like a worm; you can cut a piece off and it can just regrow, but unfortunately for Colby, because of his genetic condition, his liver can't regenerate and repair itself,' said Dr. Lam. 'It is a major surgery, so there are risks with it, but overall the donors do very, very well.' Recovery for living donors often includes up to a week in hospital followed by about six to 10 weeks at home. Colby needs a donor with type O blood (+ or -) who is healthy and between the ages of 18 and 55. An Airdrie couple is spreading the word about live liver donations as they await a donor to save their toddler's life. An Airdrie couple is spreading the word about live liver donations as they await a donor to save their toddler's life. Colby's mom says she learned there are eleven children waiting for livers in the areas served by Alberta's Living Donor Services (including Alberta and parts of Saskatchewan, B.C. and Northern Canada). That's why Colby's family and doctor are raising awareness about organ donation. 'The impact people can make with a selfless act,' said Dr. Lam. 'That huge impact that organ donation can have for the community and specifically patients like Colby.' Kidneys can also be donated through living donor programs. Anyone considering registering as a donor can contact Living Donor Services at 780-407-8698.
Yahoo
13-06-2025
- Health
- Yahoo
Hampton Roads infant with rare genetic disorder in critical need of liver donor
PORTSMOUTH, Va. (WAVY) – Infant Rhett Powell will celebrate his first birthday Friday, but his parents are hoping to give him something far greater than a toy; they want him to have the gift of life. Rhett was diagnosed at just two months' old with a rare genetic disorder, Alagille Syndrome. Only about 1 in every 30,000 babies are born with the condition, according to the National Institutes of Health. His mother, Jenna, never imagined Rhett would be part of that statistic. At 10 months, doctors revealed his condition was compounded with liver disease and his parents also learned he would need a liver transplant. 'There's also a lot of risk with the transplant,' she says. 'And we know that the risk of a transplant outweighs keeping his liver the way it is. So, there's a mix of emotions: sadness, happiness, excitement, nervousness, all of the above. Alagille Syndrome is known to cause narrowed and malformed bile ducts in the liver, which is one of Rhett's toughest hurdles. His condition causes jaundice, issues with his heart and eyes, and itching so severe that he scratches until he bleeds. His blood is also highly acidic. Jenna says Rhett only weighs 16 lbs. and is on a feeding tube. His father was left with no choice but to quit his job as he can't crawl or move on his own. For the past two months, Jenna has been searching high and low for a liver donor who could be her baby boy's perfect match. 'His perfect match would be someone that has B or O blood type,' she says. 'Negative or positive, it doesn't matter. There would need to be aged around, 18 to 60. Nonsmoker, someone with no major organ diseases or preexisting conditions like diabetes or high blood pressure. No major abdominal surgeries; no illicit drug use. And someone that is willing to do that.' If you think you may be a match or know of someone who could be a match, you can contact Jenna Powell at (757) 556-5182. Copyright 2025 Nexstar Media, Inc. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.
