Lockport baby battling rare disease in need of liver transplant

Local News
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Seven-month-old Summer is a happy baby. At first glance, you’d never know she’s battling a rare liver disease that on average, only 1 out of every 15,000 babies are born with. 

“At 2 months old when she went for her 2-month check up she was jaundice and the doctor sent us to Oishei to get checked out for further testing and through there, they found out she has a rare liver disease called biliary atresia,” Maria Laforme, Summer’s mother, said.

It’s a gastrointestinal disorder that puts Summer in need of a new liver.

“How they explained it to me, you think of tree roots that’s the bile ducts coming out of the liver,” Laforme said. “So she doesn’t have those so the bile can’t drain from the liver and it just stays in there and damages the liver and from there you can get cirrhosis, which she has.”  

She’s on a waiting list for a liver transplant.

While her family waits for a perfect match, doctors have advised limiting Summer’s exposure to germs because getting sick could put her at risk for not being able to receive a transplant.

“My kids can’t have any friends over, we can’t have any family coming over a helping us, we can’t take her anywhere someone always has to be home with her,” said Laforme.

Summer’s mother Maria said Summer needs a liver from a donor who is a petite, small-framed person, who has either type A or O blood.

Two donors did come forward and everything was a match, but the size was too big. But Maria is still hopeful someone will have the right fit.

“I want to spread the word about live donation. A lot of people don’t know you can donate part of your liver. It’s called the left lobe of your liver, for a baby. And it grows back,” Laforme said.

It’s a rough waiting game for Summer’s family but her mother says she’s found strength through other families battling the same disease, and the generosity of the community raising money through a GoFundMe account to help cover medical costs.

“It’s overwhelming and heartwarming and it’s just great to see what a community can do,” Laforme said.  

To learn more about Summer’s journey and to help click here.

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