BOISE, Idaho — Jayden DeLuca was born in Boise in 2004 with a congenital heart defect. Her parents, Jeremy and Karalie DeLuca, didn’t know what to expect.
“We found out when I was 20 weeks pregnant when we went in for our ultrasound. They could see that something was wrong," Karalie said. "She had a single ventricle, so one of the chambers in her heart just didn't develop. So she had three parts instead of four."
According to the Congenital Heart Public Health Consortium (CHPHC), 40,000 babies are born every year with the same condition. Nearly 1 in 100 babies are born with a heart defect in the U.S. each year.
“Obviously, the hardest part is watching your kid go through all the things that they have to go through," Jeremy said. "As soon as they are born, they are having all these tests done on them and going through open heart surgery and just watching them go through pain, that was the toughest part."
Jayden’s parents found comfort knowing she had a great medical team to care for her. She went to St. Luke’s Hospital for all of her non-surgical care.
Boise doesn't have a pediatric heart surgery program, so the family was sent to a Portland hospital for surgery related care.
Two-year-old Jayden was waiting to get a transplant, which sadly never happened. In February of 2007, she passed away unexpectedly at home after her heart gave out. It's still heartbreaking for her parents to talk about.
“She was at home and she was with me, and thank God that she was. Any other way, as terrible as it was, it was the best way that it could have happened," Karalie said.
The DeLuca family was devastated with grief, but their friends wanted to help. In Jayden's memory, the family asked for donations for the American Heart Association. They were blown away by the response.
“We raised a hundred thousand dollars in the first week," Jeremy said.
That's when Jayden’s family decided to start The Jayden DeLuca Foundation.
“There really wasn't a lot of people that have foundations that are supporting pediatric heart research, which is the number one birth defect in all kids, it's so underfunded," Jeremy said. "Starting the foundation helped us a lot, it helped us do something in her name."
Every year, the JDF has two golf fundraisers - a scramble in June, and a more competitive tournament in the fall. The foundation is best known for its Masquerade Ball every February. It started out small with just family and friends, and it has grown into one of the Treasure Valley’s most popular nonprofit events.
“It's just kind of been this machine that has grown and grown, and this year was year nine. We took over the entire ballroom of the Boise Centre, and it was 700 people. It was amazing," Karalie said.
Every year, the proud parents get up on stage to share Jayden’s powerful and emotional story to attendees in hopes of raising awareness and money for the foundation and its mission.
“For me, it's amazing to be able to tell her story. Each year, more and more people see the impact that she's making," Jeremy said.
The foundation has partnered with St. Luke’s Hospital. A few years ago, with the money they raised in Jayden’s name, they created the Jayden DeLuca Resource Center. It’s a place to go within the hospital for families with children who are dealing with major medical issues.
“It's an area for parents, or families, or anyone to go. You can go in there and relax, and there are computers in there. You can go in there and do what you need to do," Karalie said.
Now with the help of this year’s Masquerade Ball, the family is donating a second resource center. This one is located inside the new St. Luke's Children's Pavillion, which is set to open in early September.
“There will be someone here that can help and direct families as they come in. There are bookcases here with all sorts of resources, and different information on different diseases," Karalie said. "If you need to meet with your doctor, there's a nice private spot in this room where you can meet. If you need a place to go with your family outside of the hospital room, you can do that here."
“We really just want it to be a resource center for all of these families that are spending part of their lives in a hospital," Jeremy added.
The foundation committed $250,000 to create this new room.
“With the success of the Masquerade Ball we were able to completely fulfill that commitment, it was really cool to come and do that check presentation. Our kids were here. It's really important to keep Jayden alive in their lives, and have her legacy live on through them," Karalie said.
The DeLuca family wants to thank all the people who support the foundation in so many ways.
“Saying thank you isn't enough, it means more to us than we could ever put into words," Karalie said. "It's also really important to us that people support us and sponsor and donate to us, that they can see that their dollars really are making a difference."
“If they ever get a chance and they are in this area, if they want to stop by and check out the resource center in the Pavillion, you’ll see this is what you did," Jeremy said.
The Jayden DeLuca Foundation also hosts a second Masquerade Ball in Denver, to raise money for a hospital there that is on the cutting edge of heart research.
With the help of grants, the foundation hosts 'Heart Hero' events in Idaho for kids just like Jayden and their families. These fun social events help local heart families connect and support each other.
Years after her death, Jayden DeLuca and her family continue to make a big difference, with support and love from the community.
“She definitely the inspiration behind everything we do," Karalie said.
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