GREAT STRIDES: One family’s cystic fibrosis story

WILMINGTON, NC (WWAY) — This week we are highlighting families who day in day out work to combat Cystic Fibrosis (CF). WWAY is doing this to show you the lifestyles of those who have loved ones with the genetic disease.

You can learn more about CF’s side affects and symptoms here.

There are thousands of families that care for a family member who is a patient with CF. One of them is the Lilley family.

“I think that’s the hardest thing about CF is that she looks like every other kid, you know there is nothing, unless they see you at home doing treatment, most people do not know what she has to go through or what’s going on inside,” said Jaimie-Lynn Lilley referring to her 2-year-old Selah.

Selah was diagnosed like many early in her infancy from a newborn screening and sweat test. She has two gene mutations of the F Delta 508 gene type according to her mom. It’s one of the most commonly diagnosed mutations, but can also be the most severe.

“Each day we get up early in the morning and before Selah can eat or really think about doing anything else, we have to do her albuterol, 30 minutes on the vest and we end with a pulmozyme treatment that we just added,” said Lilley, “But all of that just has a process of breaking the mucus up for her.”

“When she is sick or fighting off a virus or bacteria or what not that increases to all that about three to four times a day. So for a toddler that’s overwhelming and not so much fun when she’s got a ton of energy.”

A lot is going on inside, but on the exterior, Lilley said her daughter is just like every other 2-year-old.

“She loves to play outside she is still trying to figure herself out a little bit,” said Lilley. “She loves running, walking, playing with our dog. Kicking the ball. We encourage all the running she can do so that it will jar stuff up, but she’s a very active kid and loves any opportunity to be outside even if it’s throwing sticks around.”

Things did not start out that way for them that way.

“It was very overwhelming. In the beginning I did not reach out too much,” said Lilley. “Because she was our first child and to find out it’s your first child and she has a disease that it extremely scary and is different for every person. I was afraid of hearing the scary parts. So I kind of avoided asking questions until maybe a year ago and really being brave enough to research and see what the future could look like.”

Jaimie-Lynn and her husband Mark had an up hill battle but once they started reaching out, hope started trickling in.

“When I did reach out, I looked for people on social media actually that have CF and I can watch their journey and see what their lives have been like whether they had lung transplants and what that experience was like,” said Lilley. “They also offer advice for moms for practical situations like what do you travel with a toddler that has CF? How do you go on a plane? What all do you need to bring? How do you take the medicines that have to be refrigerated? That kind of stuff I focused on and try to make this a way of yes she has CF but we just want to do life on a practical way and not let CF take over her, her life.”

Like most families in Wilmington, the Lilley’s have to travel to Duke for pediatric care. Others make the drive to Chapel Hill or Wake Forest CF clinics. Selah contracted a bacteria that commonly afflicts patients called psuedomonas that forced the family to spend a couple of weeks in the hospital this past spring. Even then, she was still the vibrant toddler Jaimie-Lynn and Mark want her to be.

“Bubbles are a big deal which is helpful in the hospital. When they are doing all sorts of treatments on her they blow bubbles to help calm her down.”

After that stay, more support poured in for their family. Like many families with CF members, the Lilley’s say their best medicine will always be a steady flow of hope and encouragement from the Cystic Fibrosis Foundation who constantly finds new treatments for the incurable disease.

“Knowing that we’ve overcome the fear of CF and living with it for three years now, we know that we can do this, we have hope for her future and we’re not doing it alone we have an awesome community here in Wilmington.”