By Mary Eilleen Cleary

Tara (center right) with her sisters Natalie and Brenna, and mom Mary Eilleen

Fear and sadness are embedded with Fanconi anemia (FA), yet I have always tried to have a hopeful tone to my essays thinking of the effect on the families who read it. This one is no different. I lost my gutsy 24-year-old daughter Tara in September. Her siblings nicknamed her “Puce” because she had amazing red hair. If anyone acted like a smart Alek, they were acting “pucey.” You get the idea. With her small frame, I called her the “perfect huggable human,” and I meant it. With her dry sense of humor and big personality, she also was the perfect youngest child of four. I told her that while I had those first three kids in less than four years, I waited, but knew I needed a fourth – I needed her.

She was created by God for purpose. I always told her she brought out the best in people. As the brain lesions associated with Fanconi began to multiply and her abilities began to be whittled away, all the ways we connected, and all the ways we reinforced faith in something bigger than this earth, better than a physical body that was failing, became eternally important. I would assure her that she was not her body – she was much more. She had a soul. 

Tara; and with her siblings Natalie, Brenna and Connor at Brenna’s wedding

The summer of 2025 was horrific. There were multiple aspirations and multiple hospitalizations that included an intubation. I was always hopeful when we got her home. While she was incredibly thin after continually losing weight and muscle mass, I would be encouraged by each bite she took. She could stand and take some steps with considerable help, but I told myself she was getting stronger. Then a week or so after being dismissed from the hospital, she slumped and couldn’t speak. We had dealt with so much with all the brain lesions, the seizures, the ebbing and flowing that sometimes gave a whisper of hope to her devastated family. I thought maybe the bladder infection they had been treating her for had reoccurred. We brought her into the emergency department of our local hospital in Grand Rapids, Michigan – a hospital whose doctors almost routinely admitted they knew nothing about FA, much less Fanconi Anemia Neurological Syndrome (FANS). I asked for a brain MRI as well, and they refused saying we couldn’t get one in the ER. I knew that wasn’t correct, but I justified the decision thinking they must believe it was the bladder infection, which can cause neurological symptoms in people prone to such things. We took her home.

Tara as her bright, colorful self; with her beloved dog Lily; and with her nephew Warren in early 2025, who locked right onto her!

Two days later, we were back insisting we needed a brain MRI. We succeeded in getting one, and it showed the largest lesion Tara ever had. She had what some doctors had called “speckle brain,” a lot of tiny lesions throughout the brain. This one was different – it took her speech and then within a few weeks, her life. 

Tara definitely fought the good fight. She rarely gave in to despair but often expressed confusion about what was happening to her. She said in her last year, “My body keeps breaking. I tell myself to stop breaking.” What was breaking was all our hearts. She didn’t deserve any of the heartache that FA and FANS delivered. None of the people with FA do. The added trial of FA is that one never knows which body part it will strike and with what. 

Little Tara on the way to her Make-A-Wish trip

So, how do we nurture hope? By grabbing gratitude with both hands. My hope and prayers for a cure for Tara went unanswered, but we are pulling for those still in the fight! I hurt so much for the life Tara didn’t get and the one she did, but I immerse myself in gratitude as much as I can. Gratitude: for family – so many prayed and supported; for friends – countless showed up for the visitation and funeral; for teachers from high school and even elementary school – they connected with Tara and they came to comfort us; for doctors, nurses, and physical therapists – many called me, more wrote, some sent plants and flowers and several paid their respects in person. Unbelievable. As a Catholic, I’m also grateful for the priest who showed up at our house the day she died to pray with us and then commended her soul to God at her funeral Mass. It’s comforting to understand how in her short life, she touched so many. 

The much adored little sister of the family

For those still running in the FA race we collectively hate, you have amazing, dedicated researchers and physicians who work in a lab and with patients and families, and countless others involved in the fight. We have the Fanconi Cancer Foundation with professionals of all sorts working in the trenches, serving those of us who suffer. 

Thanks to Tara for showing us an incredible example of faith, grace and courage, and thank you to everyone who aids in the war against FA. 

Gratitude may be cloaked in tears for now, but it lives.