Five-year-old Natalie Martinez is an athletic little girl, participating in gymnastics, soccer and t-ball. Little slows her down, which is amazing, since she was born with the genetic disease cystic fibrosis (CF), and at age 2 weighed less than 95 percent of kids her age.
Natalie and twin brother Ryan were born eight weeks premature in Germany, where their dad, Joe, a Captain in the U.S. Army, was stationed at the time. While Ryan thrived from the start, Natalie struggled to gain weight. Tests eventually confirmed she had CF, a life-threatening disease that clogs the lungs and causes serious lung infections. It also interferes with the body’s ability to break down and absorb food. Fifty years ago, few children with the disease survived to attend elementary school. Today, advances in treatment have enabled many of them to live into their 30s, 40s and beyond.
Joe and his wife, Jen, immediately began researching children’s hospitals in the U.S., and the Army transferred the family back to their native Chicago so Natalie could receive care at Children’s Cystic Fibrosis Center, the largest such program in Illinois. The hospital’s multidisciplinary team includes pulmonologists, gastroenterologists, nurses, nutritionists, respiratory therapists, genetic counselors and others. Children’s is also a leading clinical research center, influencing breakthroughs in cystic fibrosis care.
Since she was just a few months old, Natalie has been cared for by a team led by Adrienne Prestridge, MD, co-director of the Cystic Fibrosis Center.
“We feel like Dr. Prestridge and the CF team at Children’s is our second family,” says Joe. “They are super positive, but don’t sugar coat things, either. Also, they make you feel like you’re not just another patient family. They know Natalie and our family, and that really helps.”
Natalie’s main challenge has been weight gain. Since she began receiving nutritional assistance from a feeding tube, she has gone from registering below the 5th percentile in body mass for her age to the 67th percentile. Natalie will continue to use a feeding tube through at least puberty, and needs daily lung therapy, medications and nutritional supplements. Despite her challenges, Natalie’s dad says his daughter—who recently began taking horseback riding lessons—is a typical, loving 5-year-old.
As a member of Children’s Family Advisory Board, Joe has provided valuable input on the design of Ann & Robert H. Lurie Children’s Hospital of Chicago, where Natalie will receive care when the new facility opens on June 9 in downtown Chicago.
“Families, especially those who are here around the clock, have good ideas about how to make things easier for the kids at the new hospital,” says Joe. “Things like private rooms will be a huge improvement for families spending a lot of time at the hospital, and the kids are going to love the different displays, artwork and interactive activities on each floor.”
The Martinez family are dedicated fundraisers for research in search of a cure for CF. Their Crazy for Natalie organization hosts a variety of annual events, which have raised more than $170,000 for the Cystic Fibrosis Foundation, of which Children’s is an accredited care center.
“The average lifespan for kids with CF continues to rise, thanks to all the people who fund research into treatments and cures,” says Joe. “That’s very encouraging, and we’re confident that a cure will be found.”