By Maureen Gilmer, IU Health senior writer, firstname.lastname@example.org
Little Indie Dakota Mark is celebrating her first birthday Friday, St. Patrick’s Day.
Her Lucky Charms-themed party is on brand and a nod to the Mark family’s lucky little leprechaun.
Indie, the youngest of Kyle and Taylor Mark’s three children, may have been dealt a rough hand at birth, with a diagnosis of cystic fibrosis, but she and her parents are stepping into a world of new treatments and advancements in science.
The diagnosis of CF, which was picked up on Indie’s newborn screening, came as a complete surprise to the Marks, whose older kids don’t have the disease.
The progressive, life-threatening condition, which causes thick, sticky mucus to build up in the lungs, digestive tract and other areas of the body, can result in poor nutrition and growth, frequent respiratory infections, breathing problems and chronic lung disease.
“When we found out about CF, we just knew what we’d seen in movies, and they only show the terrible things,” Taylor Mark said. “There are new treatments that she doesn’t qualify for yet because she is too young, but they are changing the game.”
Trikafta is a new FDA-approved therapy for ages 6 and older that combines three drugs to target a defective protein in the body. It is not a cure, but it is considered a highly effective therapy that is extending life for tens of thousands of CF patients with the Delta F508 gene, which Indie carries.
Another new treatment, Orkambi, was recently approved for children ages 1 to 2 who have two F508del mutations.
Because of her diagnosis, Indie, who is under the care of Riley Children’s Health pulmonologist Dr. Angela Delecaris, has been a frequent visitor to Riley. She has been admitted three times for two or more weeks at a time due to respiratory infections.
The most recent stay was in November, when she was hospitalized with RSV and other respiratory viruses.
“With CF kids, when they get a bug, their mucus is so thick it just attaches to them and it takes them longer to get over something,” Mark said. “She was very sick and was in the ICU for a week and a half. It was really bad, but she’s a lucky little baby.”
Outside of those emergencies, Indie is seen regularly in Riley’s Cystic Fibrosis Clinic, the only pediatric center accredited by the Cystic Fibrosis Foundation in the state.
Indie is one of about 340 CF patients who are seen in the clinic, which has a large team of physicians, nurses, social workers, respiratory therapists, pharmacists, dietitians and child life specialists dedicated to patient care.
“Everyone we’ve come in contact with has gone above and beyond for Indie,” Mark said.
Social worker Kayleen Jones has gotten to know Indie and her family over the past year and shared how Mark has found a creative outlet to spread awareness of cystic fibrosis. She embroidered a pair of lungs on a tiny purple sweater for her daughter.
Purple is the awareness color for CF.
“CF primarily affects the lungs, so this is a super cute way for her to show that her daughter has a chronic lung disease, but also an amazing way to take care of her own mental health,” Jones said.
Mark has done embroidery for friends and family members as well, in part to thank them for their support of her little girl.
At home, Indie gets plenty of special treatment from her older siblings, who described her as a “cute little chicken
rat” when she was born. The name stuck, Mark said. The nurses on the pulmonary floor lovingly refer to her as “chicken rat” at times.
Indie, who has a G-tube to make sure she is consuming enough calories, gets multiple breathing treatments every day at home.
“It was a lot at first, but we’re doing better now,” her mom said. “We’re finding out what’s working for her.”
Jones understands the stress a CF diagnosis can bring.
“We have a big team to support them because we know how much time it takes, and we know how hard it can be on these families when we’re asking them to do all of this,” the social worker said.
Older CF patients who are doing well are seen in clinic every three months so the team can check their lung function, weight, mental health, etc., and smooth out any issues with prescriptions and insurance.
CF is a condition most people don’t know a lot about, Jones said, “but I would argue it’s one of the hardest chronic illnesses to manage, and I think people should know how hard these kids work to keep themselves healthy.”
With the advances in treatments, Jones has seen her role widen from supporting young kids and families to working with teens on plans for their future.
“We’re helping them transition to adulthood, talking about college and life goals,” she said. “It’s very exciting.”
Mark agrees, saying the evolution in therapy gives her hope.
“Nobody wants their kid to have CF, but science is just amazing.”
Photos by Gwen Mark and Taylor Mark