The Beginning

The hardest part about receiving my son Israel’s Fanconi anemia (FA) diagnosis was the timing. It came just two months after our nephew passed away from complications following his bone marrow transplant for FA. When we heard the news about Israel, he was only 16 months old. I felt like we were being handed a death sentence. I was consumed with fear and with thoughts of Israel dying.

That fear never fully went away.

People often assume that a bone marrow transplant (BMT) is a cure for FA. It isn’t. Even after transplant, we live with so many risks, especially the ever-present fear of cancer. That part doesn’t go away after BMT. I wish more people understood that.

Our Little Lewis

Israel endured so much in his short life. But even in the hardest moments, he brought so much light. One of my favorite memories from his transplant journey was how he never went by his real name. The first doctor we saw when he was admitted asked him his name, and Israel replied, “Batman.” From then on, he cycled through names from his favorite movies: Randall, Pascal, and eventually Lewis.

It became a fun guessing game with the nurses. Every day, they’d ask, “Who are you today?” and Israel would respond with a new character. The last name he chose was Lewis, from Meet the Robinsons.

On the day of Israel’s transplant, we had a resident assigned to us. Months later, when Israel was in the ICU at the end of his life, that same resident happened to be on rotation. Israel was struggling to breathe, and it was time to put him on a ventilator. The resident got down on eye level with him and said gently, “Lewis, we’re going to help you feel better.” That was the last time Israel was awake. It meant so much to me that this doctor, who had been with us at the beginning, was also there at the end, and that he honored Israel’s wish to be called Lewis.

Israel always wanted to be a doctor, just like his dad. For a while, he set his sights on becoming a neurosurgeon. He even had a little pair of scrubs he loved to wear. He was so much more than FA. He was bright, imaginative, and incredibly brave.

Looking Forward, While Honoring the Past

Israel died ten years ago, and even now, I’m grateful for how far care and treatment have come since then. I hope we continue to see more effective treatments for bone marrow failure and for cancer in people with FA, so that no other child has to go through what he did.

To the donors who make research possible: thank you for believing in and supporting work that improves the lives of people with FA. You give families like mine the gift of hope.

Israel’s sister Mariana lives with FA and had her transplant in 2016. Her brother Isaac was her donor. She’s doing well, and this year, we were finally able to attend our first FA family camp. Being there was a powerful reminder of how far we’ve come, and how strong this community truly is.

Israel’s Legacy

Not long after Israel passed away, I started thinking about how I could help children like him and families like ours.  So many people provided us support, financial and otherwise, during his transplant and I wanted to do the same for others.  AIM Strong, Inc. was founded in 2016 and we made our first delivery of care packages to families on the BMT Unit at the University of Minnesota in 2017 while we were there for Mariana’s 6-month post-BMT follow up.  Since that time, we have helped over 1100 children receiving a bone marrow transplant.  AIM Strong, Inc. honors the life and legacy of Israel, while providing support and encouragement to families going through bone marrow transplant with their child.  While I can no longer do things for Israel, it helps my grieving heart tremendously to be able to help children like him.  

For more information about AIM Strong, Inc., visit aimstronginc.org

The post Living With FA, Loving Beyond It: Israel’s Story appeared first on Fanconi Cancer Foundation.