Hendricks County Flyer, Avon, IN

April 13, 2013

Avon family lives with cystic fibrosis

April is Organ Donation Awareness Month

By Brenda L. Holmes

AVON — Learning about cystic fibrosis has become a way of life for RD and Aimee Albright of Avon. Two of the couple’s children were diagnosed with the disease and need lung transplants.

The couple has three children: Adam, 19; Melanie, 17; and Rosie, 12. Both of their daughters were diagnosed with cystic fibrosis at an early age.

“When Melanie was 4 months old she had only gained 10 ounces and she had a small birth size,” Aimee said. “They kept saying it was ‘failure to thrive.’ We had had one false negative for cystic fibrosis.”

It was on March 7, 1996, that the couple learned their baby did have cystic fibrosis.

“It is a genetic defect,” said RD. “We both have the gene and passed it on to our girls. They have to control their salt properly because their body just dumps it out.”

Without salt, the body’s fluids become thicker and can cause infections.

“Many people with cystic fibrosis are also diabetic,” he said. “It can plug up the pancreas and shut it down.”

He said the defect causes chronic lung problems and that both of their daughters will need transplants.

“Live expectancy without lung transplants is about 37,” Aimee said. “With transplant and exercise and effort they will live up to 80 and have a pretty normal life. Without a transplant that will not happen.”

One way the family helps control their daughters’ trips to the hospital is by home schooling. Keeping them away from people during the cold and flu season helps keep lung function up and the chance for bacteria down.

The Albrights have learned much about cystic fibrosis over the years.

“One thing people don’t know is that Caucasians have it more often,” said RD. “It is really more of a European ancestry or German ancestry thing.”

Aimee said Melanie now qualifies for a transplant program in Indianapolis. There are no facilities in the state that are equipped to do juvenile lung transplants.

“Now that she is older she keeps track of her own meds and is very independent,” she said. “We recently left for a week and Melanie did great. I have no doubt that she will be able to take care of herself post-transplant.”

To prepare for when their transplants become available, the family has been raising funds through the Children’s Organ Transplant Association. The original goal is to have both funds complete with $60,000. The family has $12,000 remaining to raise.

“The community has really gotten behind the girls,” Aimee said. “We also had a very big gift from our church, Kingsway. It was an amazing gift.”

To help raise funds for the girls’ transplants, a group of people have organized Girls Night Out, a fundraising event set for 5-9 p.m. April 19 at the Plainfield Recreation and Aquatic Center, 615 Vestal Road.

Ericka Bethel is one of the community members helping to organize the event.

“We are really excited about the event,” Bethel said. “There will be 30 vendors.”

The ladies-only event will include a night of food, shopping, and relaxation to benefit the Children’s Organ Transplant Association in honor of Melanie and Rosie.

There will be a coffee/smoothie bar, desserts and appetizers, music, mini massages, shopping from local vendors and craft booths, and a silent auction. There will also be door prizes.

There is no cost to enter the event but there are many opportunities for donations. Those shopping will see a percentage of their total spent go to the event.

Aimee said the family’s first priority is to get the girls’ transplants funded. But they’re equally passionate about organ donation.

April is Organ Donation Awareness Month.

“It is so easy to become a donor,” she said. “Indiana is not an automatic donor state so you do have to opt in to be a donor.”