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'Fighting for James' to Raise Money for Toddler's Battle Against Heart Disease

Feb 20, 2016 02:56PM ● Published by Shannon Antinori

At just 2-1/2 years old, little James Smith has already undergone five heart surgeries, and will likely have more, but one thing is certain, his mom says: Some day, he’ll need a heart transplant.

The tot and his family have been on a rollercoaster ride since he was diagnosed with congenital heart disease at just a few days old. Now, family and friends are stepping up to host a fundraiser to help the family be ready when the time comes for a transplant.

The Fighting for James Fundraiser is slated for 5 to 11 p.m. Saturday, April 30, at the Yorkville American Legion, 9054 Route 34. The event will include a DJ, dinner provided by Olive Garden and a scheduled appearance by Chicago Blackhawks organist Frank Pellico.

Mom Michelle said she knew something wasn’t right just hours after James was born at Rush-Copley Hospital in Aurora.

“He slept the whole first night, which isn’t normal,” she said. Newborn baby James also wouldn’t eat. He was taken to the NICU, where doctors diagnosed him with an enlarged heart.

Michelle said she and her husband, also named James, were shocked.

“We were really numb then,” she said.

At two days old, he was transferred to Advocate Christ Medical Center in Oak Lawn. He spent the next five days in a medically induced coma before undergoing his first open heart surgery, Michelle said.

Michelle and her husband stayed at the hospital with their son while in-laws cared for their two young daughters, now 8 and 5.

Baby James was diagnosed with Shone’s complex, a rare congenital heart disease marked by four different heart defects affecting the left side of the heart. He also has endocardial fibroelastosis, which means the left side of his heart was severely underdeveloped, according to Michelle.

Through a series of surgeries, doctors had to “re-plumb” little James’ heart to work on the right side, she said. After his diagnosis, Michelle said she had to take a leave of absence from work to care for James.

“We got a lot of help from family,” including a fundraiser that helped the Smiths pay off medical debt related to baby James’ surgeries.

James is recovering from PTSD related to his many hospitalizations and medical procedures, but is in many ways your typical 2-year-old, his mom said.

“He runs and plays and does everything a normal 2-year-old does,” she said.

James takes four medications every day, which require precise dosages. Eventually, he will need a heart transplant.

“His heart’s just not going to last,” Michelle said. “It could be a year, it could be five, it could be 10, it could be 20.”

The April 30 fundraiser is intended to help the family prepare.

“They don’t want us to worry about it,” Michelle said.

Tickets for the event are $10 for adults, $5 for kids ages 2 to 10 and free for kids under age 2. 

In addition to dinner and entertainment, the event will feature more than 100 raffles, with prizes donated by area businesses, as well as a 50/50 raffle.

To purchase tickets, contact Kim Smith at 630-801-9587 or heartsforjames@outlook.com

 Visit the Fighting for James Fundraiser Facebook page for more information and updates on raffle prizes. Get updates on James’ fight at his CaringBridge site.

VISIT THE FIGHTING FOR JAMES GOFUNDME PAGE

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