a day ago
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.
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