On a Thursday morning around 9:30 am, my whole world shattered. My daughter, Isabella, passed away in my bed. She was just seven years old, taken from us by neuroblastoma, a rare pediatric cancer that had no more treatment options, no more hope and hardly any funding. The drug that had the potential to save her life was considered too unprofitable to invest in, so we were left helpless as we watched her life end far too early.
Losing a child is a heartache that’s beyond words, a wound that never truly heals. It leaves a void that can never be filled and a constant reminder of what could have been. Yet, amid impossible grief, I found a way to turn my pain into something meaningful. My journey has been learning to live with loss and using it to build a life filled with purpose.
Isabella was my firstborn. She came into our lives on March 9, 2005, and from the start, she was bold, outgoing, and a bright light to everyone around her. She was kind to strangers and loved putting on a show. Two years after Isabella was born we welcomed her little brother Grant into the world.
Life was happy and full of joy until shortly after Grant was born, everything changed. Isabella started experiencing aches and pains unusual for a toddler. After several tests, we received the diagnosis that no parent wants to hear: Isabella had a rare and aggressive pediatric cancer with only a 40% chance of survival.
With fewer than 700 cases of neuroblastoma in the United States, information and treatment options were scarce. Faced with limited options, I quickly became Isabella’s fiercest advocate. I dove headfirst into research, questioned every medical recommendation and fought tirelessly for her. Seeking the best possible care, we frequently traveled from our home in Charlotte, North Carolina, to Memorial Sloan Kettering Cancer Center in New York. Balancing Isabella’s intensive treatment and the demands of another young child was overwhelming. I poured everything I had into Isabella’s fight while trying to maintain a sense of normalcy for Grant. It was painfully exhausting, both physically and emotionally, but we continued to fight for Isabella and for our family.
In 2007, the same year as Isabella’s diagnosis, I founded the Isabella Santos Foundation (ISF). Faced with limited treatment options, we had no choice but to take action ourselves to make a difference not only for Isabella but for all families battling rare pediatric cancers. Through ISF, I discovered that even small contributions could lead to significant impact over time. Even raising $50,000 could provide new equipment or fund crucial research. These achievements, though modest, were transformative for families like ours and offered hope for advancing pediatric cancer treatments.
Isabella’s battle continued for five long years. Her courageous spirit carried her through five relapses and countless treatments. She confronted each challenge with bravery beyond her years, frequently speaking to large crowds and even asking strangers for blood donations. She understood that her fight was about something greater than herself and that her all-too-short life had a profound purpose. Despite our relentless fight, Isabella passed away in 2012 at the age of seven. Her death left a void in our lives that could never be filled, but it also solidified my resolve to carry on the work we had started together. Through ISF, I’ve been able to honor Isabella’s legacy by supporting other families, raising awareness and advancing treatment options and research for rare pediatric cancers.
My life today looks a little different. Remarried to my greatest love and raising our combined children, I still find great purpose in this mission. It doesn’t fill the void left by Isabella, but it gives her life meaning and honors her legacy. Every day, I’m reminded of what’s missing, but I also see the impact of our continued fight—how we’re making a difference for other families, offering them hope and a fighting chance.
My advice to other grieving parents is this: healing doesn’t mean forgetting or moving on. It means finding a way to live with loss and using it to propel you forward. The pain will always be a part of me, but it doesn’t have to stop me from living a fulfilling life. My second act has just recently begun, and I am embracing it with the same joy that Isabella always carried in her life.
If you’ve lost a child, know that you’re not alone. The pain will profoundly change you, but it’s possible to find meaning and direction through your grief. It’s about moving beyond the loss, to live a life that would make your child proud. What I went through with Isabella has both filled my heart and broken it.
Today, 17 years after her diagnosis, I know why this role was given to me. Her life, though short, was filled with purpose and opportunity, and it’s my mission to ensure that her legacy continues to impact the lives of others—including my own.
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