By Sharla Strickland
When Hunsley was born premature at 36 weeks, we immediately noticed her fighting spirit. Her right thumb wasn’t fully developed, but the doctors told us it was just a trigger thumb. She started bruising, and at one point, she was almost sent to the NICU, but again, it was explained away, this time as a sign of her premature circulatory system.
We kept pressing for answers. At an orthopedic appointment for her thumb, they discovered she had bilateral hip dysplasia, which meant she had to spend four months in a full body cast. On top of that, she battled life-threatening sepsis again and again due to severe kidney reflux. After many hospital stays, we were finally sent to Dallas for further testing on her thumb, and that’s where we got the diagnosis: Fanconi anemia. Hunsley was just two years old.
Living with FA changed every part of our daily life. Hunsley was constantly fighting infections, and hospital stays of 10–14 days became our normal. We changed our entire lifestyle to protect her. I carried a medical journal everywhere we went, always ready to share her complex history in an emergency. We never left her side, because a sudden fever or infection could happen anytime. She had febrile seizures, so we carried her rescue medication everywhere, just in case. From giving daily meds, to making constant calls to her doctors, to endless appointments — FA became part of every decision we made.
Through it all, Hunsley taught us what true resilience looks like. She never cried when she had blood drawn. She just knew it was part of her life. Her toughness was what got me through many of the hardest days.
We were so grateful to find Dr. MacMillan in Minnesota and began traveling there every year for specialized care. Those trips became so much more than doctor visits; they gave us time to make memories together, away from the daily stress.
One of the things I wish more people understood about FA is just how serious it is. It affects so many parts of the body and demands so much from the person fighting it and their family. It isn’t something you can just “manage”. It’s a daily battle. Even a bone marrow transplant, as critical as it is, is not a cure, it’s a way to give these incredible kids a better chance at life.
Today, I still pray daily for those currently battling FA, for the families who fight alongside them, and for a cure. I also pray for families like ours, who have lost a loved one and carry that grief with them every single day.
If you asked me for a defining memory of our journey, it might surprise you. Some of my most cherished moments were the long hospital stays — the time I got to spend one-on-one with Hunsley, free from the distractions of the world. I also remember her winning a karaoke machine during a hospital BINGO game. She sang and danced her heart out for all the nurses! No matter how she felt, she showed up with her whole heart, loving her family, her faith, and everyone around her.
Hunsley was so much more than her diagnosis. She loved to sing and dance. She loved spending time with her family. She loved going to church, praying for others, and helping anyone who needed it. She had a spirit that drew people in, and she loved so fully. I strive every day to live like she did.
When Hunsley was six years old, she underwent a bone marrow transplant. After transplant, she developed an infection that turned into sepsis. She spent 35 days in the hospital on ECMO, fighting with the same courage she showed her whole life. On the 35th day, she passed away peacefully, surrounded by her family.
Today, we continue her legacy through Hope For Hunsley. We send cards to other FA families, and we started the Hope For Hunsley Toy Closet at our local hospital, a place where children enduring hospital stays can pick out a toy. Each toy is labeled with a Hope For Hunsley sticker where families can scan and read her story.
To every donor who makes FA research possible: thank you. You give families like ours hope — real hope — for a better future. Your support means more than you could ever know.
Even though Hunsley is no longer physically with us, her love, her strength, and her beautiful spirit live on in everything we do.
