Elgin girl gets new lease on life after lung transplant
Ashley Ramirez spent much of her childhood wishing she could play and run around with her friends and cousins, and just be normal.
The 11-year-old from Elgin was born with cystic fibrosis — a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time.
After years of respiratory illnesses, various medications and treatments, hospital stays and round-the-clock oxygen, Ashley needed a new set of lungs. And by chance, she got one — four days after being listed on the organ transplant registry.
“I was kind of surprised,” Ashley said. “I thought it was going to take longer.”
Ashley underwent a double-lung transplant in early October at St. Louis Children's Hospital. She now is recovering at the Mid-America Transplant Family House in St. Louis and is busy with doctor appointments, rehab therapy and spending time with her newborn sister, Abigail.
Within the first week post-transplant, Ashley's lungs were functioning normally.
“I feel good,” she said, “and I feel really easy that I can breathe now.”
‘A new lung today'
For Maribel Ramirez, the idea that her daughter would be able to live a normal life was almost unimaginable for 11 years.
At a year, Ashley started losing weight and had her first surgery to insert a feeding tube into her stomach.
She started getting lung infections early on and was always on antibiotics. By age 7, Ashley needed tuneups to clear out the phlegm from her lungs for two weeks at a time at Advocate Lutheran Children's Hospital in Park Ridge.
“She handled it pretty well,” said Ramirez, 35. “She was always a strong cookie ... never complained about anything.”
At age 10, Ashley was in and out of the hospital nearly the entire year as “the infections started coming back frequently,” Ramirez said.
Her lungs were functioning around the threshold for eligibility to be listed on the transplant registry. The family moved temporarily to St. Louis, where Ashley was evaluated for a lung transplant in March.
“At that time they said no. We had to come back every three months to see how well she was doing,” Ramirez said.
Ashley was admitted to the pediatric intensive care unit at the children's hospital Sept. 29 and was deemed ready to be listed for a double-lung transplant.
“Within four days, we had a donor,” Ramirez said. “(To find a) donor usually takes up to two to three months ... sometimes even a year. I was just in shock. My daughter saw me crying and she goes, ‘What's wrong?' I couldn't even get the words out ... you are getting a new lung today.”
The surgery lasted seven hours. Ashley couldn't talk for the next two days because of the tube down her throat. Her treatment and recovery will take three months.
Community support
Transplants typically can cost over $500,000. Though much of Ashley's medical bills will be covered through insurance, the Ramirez family needs an estimated $50,000 to pay for transplant-related expenses and is seeking the community's support.
Ashley's family members, classmates and teachers at Hillcrest Elementary School in Elgin are raising funds to help. So far, volunteers have collected $1,600.
A fundraiser is scheduled Wednesday at Nick's Pizza & Pub in Elgin through the Children's Organ Transplant Association, a national charity that helps families with transplant-related costs.
Organizers also are planning a family 5K color walk/run next spring, possibly in partnership with Elgin Community College, with 50 percent of proceeds benefiting Ashley.
“I'm hoping Ashley can be at that with us,” said Misty Kennedy, school nurse and community coordinator for COTA.
By January, the family plans to return to Elgin, where Ashley will receive home tutoring because of a high risk of infection. She will begin sixth grade at Hillcrest next school year.
With a new lease on life, Ashley is making plans for what she would like to do first once her post-transplant treatment is complete.
“I like to swim. I would like to participate in soccer,” she said. “I'd like to play with my friends and run around in the playground.”
Ashley's Holiday Bash
When: 5 to 9 p.m. Wednesday
Where: Nick's Pizza & Pub, 990 S. Randall Road, Elgin
Info: Call Misty Kennedy at (630) 940-8998.
To donate: <a href="http://cotaforashleymarie.com/">cotaforashleymarie.com.</a>