Meet Madison & MaKenna Henry


Amanda Williams says she got a “crash course” in Cystic Fibrosis the day her then-14-month-old daughter, MaKenna Henry, was diagnosed with the disease in 2008. Pregnant at the time with MaKenna’s sister, Madison, Amanda says she knew nothing at all about CF, much less that she and the girls’ father were both carriers of the disease.

Arkansas Children’s Hospital was well equipped to educate them on the spot, she says. “Arkansas Children’s has a team for everything,” she says. “They were ready to address our concerns, not just about her physical health, but also the mental and nutritional challenges we would face. They also welcomed anyone from our family who would be involved in MaKenna's care to come to learn about CF.”

When Madison was born a few years later, it was immediately apparent that she also had CF. Madison was born with meconium ileus, which is a bowel obstruction that occurs when the meconium in the intestine is even thicker and stickier than normal meconium, creating a blockage in a part of the small intestine called the ileum. In order to remove the blockage, Madison required a very serious surgery followed by a four-week stay in NICU.

Being a new mom can be challenging under the best circumstances, but being a new mom to two babies with chronic, life-threatening illnesses raises the daily difficulty level considerably. But Amanda says she was determined to raise her daughters as normally as possible.

“When the doctor gave us the news that MaKenna had cystic fibrosis, he told me, ‘Please never treat her as her disease. Treat her as your child, discipline her as your child. Don’t label her or keep her in a bubble.’” It was advice that Amanda and her family took to heart.

“I’ve tried my hardest not to be a hovering parent, because I knew it would be so easy to do that.”

Amanda says she has been mindful to give both girls their share of responsibility for their well-being. Now 11 and 10, MaKenna and Madison are both seasoned pros at taking their own medicine and doing their twice-daily breathing treatments using a vest machine.

“They know what they need to do. One of my biggest fears is that they'll stop doing it when they're older and on their own.  I really want to instill in them that their treatments are important and save their lives.”

Thanks to those medications and treatments, the Henry girls have not had to be hospitalized for six years. The girls now go to Arkansas Children’s Northwest for the majority of visits, which is conveniently closer to their home in Harrison. Amanda says they are both typically active pre-teens, and “you would not be able to tell that they have CF at all.” They both love jumping on their backyard trampoline and riding four-wheelers with their grandfather. Madison loves animals and wants to be a veterinarian when she grows up. MaKenna loves making art, and “is like a little mom already” with four younger siblings, according to her mom.

Amanda says the experience has taught her to live in the moment. “I believe there will be a cure for CF one day. I try to be as positive as possible. If you’re always thinking, 'I feel so bad for my kids,' you’re only putting negativity around the whole situation.”

“Everyone says I’m so strong, but what else was I going to do? I feel honored to be their mom. God has put a lot of faith in me, I guess. It is hard to have a child with disabilities, but I feel like I was meant to do it.”

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