Lyn Acebo and her daughter, Jaci, have much in common — including heart disease.
Three months after Jaci was born in 1990, doctors diagnosed her with cardiomyopathy, a heart muscle disease that normally requires a heart transplant. Just three months later, Lyn, then 30, was diagnosed with the same disease. Lyn, it turns out, was able to manage her disease with medication, but Jaci was not so lucky. Despite the doctors’ best efforts with medication, Jaci had to be placed on the transplant list by age 10. It would be five months before a donor heart became available, and she experienced three major rejections within a six-month period after the surgery.
“We came really close to losing her one time,” Lyn says. Before surgery, Jaci also required no fewer than 40 heart catheterizations to measure the pressure in her heart before her transplant (her mother has needed only two), and must now submit to lengthy tests to make sure her kidneys are okay, because the medicine required as part of her transplant can be very hard on particular organs.
Jaci is now healthy and looking forward to college, but throughout all the ordeals Lyn says she and her family felt alone, isolated and confused. So she did something about it. Shortly after her daughter’s surgery, Lyn helped create the Children’s Heart Foundation, a nonprofit that helps families in similar circumstances, either emotionally or financially. “It’s just nice to know there’s someone else out there who knows what you’re going through,” Lyn says. Since its creation in 2000, she has personally met with at least 100 affected families.
But the need is greater than Children’s Heart Foundation can provide. More than 400 children are diagnosed with some form of heart problem in Nevada every year, and services to those children are in woefully short supply. “There’s more focus on cancer, but nearly twice as many kids die every year from congenital heart disease as from cancer,” Lyn says. She’s certainly doing her part, also organizing the annual “Camp Mend-A-Heart” in Alamo (about 90 minutes north of Las Vegas) and “Walk With the Heart of a Child” fundraiser, which will be held February 10 at Fashion Show. Last year’s walk raised more than $100,000, and proceeds help provide the summer camp free of charge to children with heart problems.
Lyn is getting plenty of support from her family and from Dr. William Evans, the doctor who co-founded the Children’s Heart Center in 1985 and who originally diagnosed her and her daughter. (Her nonprofit’s offices are in the center.) Jaci recently spoke to her Las Vegas Academy class on being an organ transplant recipient, and assists her mother in all aspects of the foundation.
“Years ago, we heard about a baby born with heart disease. When we went to see her, Jaci brought her a stuffed Tweety Bird because that was her favorite toy she got in the hospital when she was diagnosed. Jaci has been in contact with that girl her entire life, and they’ve been to camp together both years. I couldn’t do this without her.”
For more information, call 967-3522 or visit chfn.org.
Copyright 2007 Las Vegas Life
