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Liver donor comes forward to help Chelmsford toddler

Update: Shortly after her interview with NorthernLife.ca, Elyarra's mother, Elizabeth Judd, said she returned home and received a call that the hospital had found a liver donor for her daughter. “They said, 'How soon can you come?'” she said.
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Toddler Elyarra Joly and her mother Elizabeth Judd visited the NorthernLife.ca office Tuesday, where they pleaded for the public's support to help Elyarra find a liver donor. Elyarra lives with Alagille syndrome which, among other health concerns, makes her jaundiced. Photo by Arron Pickard
Update:

Shortly after her interview with NorthernLife.ca, Elyarra's mother, Elizabeth Judd, said she returned home and received a call that the hospital had found a liver donor for her daughter.

“They said, 'How soon can you come?'” she said.

She left for Toronto Tuesday afternoon, and arrived around 9 p.m.

Elyarra is scheduled for surgery Wednesday afternoon.

Judd said the liver donor has decided to remain anonymous, at least for now.

“They're giving my little girl so much more than just a new liver,” she said. “It's giving her life and hope.”

The surgery is expected to take several hours, and Elyarra and her family will remain in Toronto for at least a couple of weeks for her recovery.

Judd said the surgery has a very high success rate.

“We're hoping for the best and crossing our fingers,” she said.

Original story:

Chances are you've never heard of Alagille syndrome.

According to some estimates, the rare genetic disorder affects only one in every 100,000 live births.

Rare as it is, a Chelmsford family became acquainted with Alagille syndrome almost three years ago, when their little girl, Elyarra Joly, was diagnosed with the devastating disorder.

Elyarra, who turns three on Sept. 26, relies on a feeding tube to eat and has jaundice, as well as large bumps around her body formed by cholesterol deposits.

Alagille syndrome causes abnormalities in a person's bile ducts, resulting in a build-up of the digestive fluid that scars the liver and prevents it from working properly to eliminate waste from the bloodstream.

After a series of medical tests in Toronto last month, Elyarra was added to a wait list for a live-saving liver transplant.

“She would not be jaundiced anymore, her bumps would eventually go down over a year's time, she would be able to hopefully walk, work on her motor skills, and be able to concentrate on her life,” said her mother, Elizabeth Judd.

There is no cure for Alagille syndrome, but Judd said a liver transplant would give her daughter a chance at a better quality of life, and would prevent a liver failure from shutting down her body.

The surgery would also allow her family to focus on Elyarra's less urgent health matters, including a heart murmur, an enlarged spleen and smaller-than-normal valves to her lungs.

But the wait for a liver can take anywhere from a few months to a year or more.

Patients receive their transplants based on their level of need, unless they are able to recruit a live donor.

Elyarra's blood type is A, but an adult donor with type A or O blood could be a candidate for a transplant.

Judd said she cannot donate her liver because she does not have the right blood type, and her partner Gilles is not a strong candidate due to an illness during his childhood.

The University of Toronto Health Network operates a living donor program and anyone interested to make a liver donation to Elyarra, or to anyone else, can choose to go through the thorough vetting process.

The network provides living donors with extensive manuals on liver and kidney donations, and a detailed donor health history form.

Potential donors who wish to donate to Elyarra should know her birth date is Sept. 26, 2012, and that her blood type is A.

Would-be donors can also request a blood test, to determine if they are fit for donation, from any clinic or their family doctor.

Judd and her partner have also started a GoFundMe page to help cover Elyarra's medical costs – which total around $2,000 a month.

“We're trying to keep up with all the medical bills we have,” Judd said.

While most of Elyarra's medications are covered by Ontario Health Insurance, her vitamin supplements and some medical equipment does not receive the same level of coverage.

To receive the specialized medical care she requires, Elyarra and her family also travel to Toronto Hospital for Sick Children, or the Children's Hospital of Eastern Ontario in Ottawa, around once every three to five weeks.

“It's definitely a struggle to keep up with everything, as well as all her needs,” Judd said.


Are you registered to be an organ donor? If not, becoming one is easy. Simply visit BeADonor.ca to sign up.

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Jonathan Migneault

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