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VALPARAISO — Twelve days before she turned 4, Adelyn Joy Hughes got the best birthday gift of her young life.

The Valparaiso girl received a much-needed heart transplant on Sept. 20 after undergoing six open heart surgeries and waiting 10 months, said her dad, Allen Hughes.

"She got an early birthday gift," he said. "It's been a very long road, needless to say."

Hughes said Adelyn, whose nickname is Addie, already has a long story to tell starting shortly after she was born to Hughes and his wife, Becky, on Oct. 2, 2017.

Doctors suspected Addie had a heart problem so an echocardiogram was performed at Lurie Children's Hospital of Chicago. It revealed her mitral valves were bad, Hughes said.

At only 8 weeks, Addie had her first open heart surgery to repair her partial atrioventricular septal defect, or ASVD (a term for a group of rare heart defects that are present at birth).

Over the next eight months, Addie underwent four additional open-heart surgeries, as well as experiencing other complications. She had two mechanical valve replacements, and had an appendage on top of heart removed. After a series of complications, Addie received a particular kind of heart valve called Melody in July 2018.

In addition to open-heart surgeries, Addie had issues with aspiration and pneumonia and had a G-tube placed for tube feeding.

Addie initially wasn't eligible to be on the heart transplant list because of a pulmonary hypertension condition, Hughes said.

She underwent yet another surgery and it reduced the pressure, allowing Addie's name to be placed on the heart transplant list in early November.

The wait for a heart transplant was long, but on Sept. 15, the family got the call they were praying to receive.

"We were told that they had a potential match for her," Hughes said.

Their joy was short-lived.

"The donor was not a viable match for her. We were let down, but we went back to normal," Hughes said.

Four days later, the family got another call that a donor heart had been found for Addie.

Viable heart match found

"That one worked, and on Sept. 20 she had that surgery that took well," Hughes said.

Addie was bedridden for a week or so following her surgery, but is up to walking a half-lap around her unit nowadays, Hughes said.

Addie celebrated her fourth birthday at Lurie's, but thanks to staff there it was a special one.

"We had a full birthday party for her," Hughes said.

Addie wanted a mermaid theme for the celebration so Child Life specialists at Lurie had a local bakery make her a special mermaid cake.

Her sisters, Kaliyah, 7 and Isabel, 5, were able to visit as were their grandparents.

"No other visitors are allowed," Hughes said.

They said they are grateful Addie was able to get a heart transplant.

"COVID really slowed down the transplant timeline, and it's harder to get a heart for a young child. There aren't that many out there," Hughes said.

As far as her recuperation goes, Addie continues to be a typical 4-year-old who has seen all the Disney movies, enjoys playing with dolls, blocks and magnet tiles.

"She has a very spunky personality," Hughes said.

She only has been allowed to go outside on a patio outside the 11th floor of the hospital twice.

"She's excited to go outside and play with her sisters and go swimming again," Hughes said.

Even once released from the hospital - which is expected to take place this week - Addie will need to be on eight to 10 medications and continue with doctors visits.

After the release from the hospital she'll go to stay at Ronald McDonald House before being allowed to go home. 

"The first three months are very critical for her not to get sick or be around sick people," Hughes said.

Addie, who will wear a medical alert bracelet, will continue going to cath labs to make sure she is not rejecting her heart. That will mean regular visits to Lurie.

Hughes is hoping that in a year, Addie will be closer to living a more normal life.

"She will start preschool this time next year," Hughes said.

For more information on Adelyn's progress, a private Facebook site has been set up for her called Prayers for Adelyn Joy.

A GoFundMe account has been set up for Addie by friend of the family, Lindsay Humpfer, under Team Adelyn Joy.

This article originally ran on nwitimes.com.

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