Contributed by Wheela Sunstrom
IT STARTED WITH A GIRL…
Isabella’s mom has told her daughter’s story more times than she can remember. But that doesn’t mean it gets any easier. In fact, the more time that passes, the harder it becomes. Each day brings the knowledge that Isabella is no longer here, that the world is missing out on the person her daughter could have been. Each time the words come out of her mouth, she is reminded that she must talk about Isabella in the past tense. The way she says the words may change – sometimes her voice cracks, other times it’s almost deadpan, matter-of-fact.
But the details are always the same: 2007. Pain. Doctors. Tests. Tumor. More tests. Diagnosis. Cancer. Rare. Survival rate. Treatment plan. Chemo. Surgery. Radiation. Cancer-free. Antibodies. Relapse.
Wash. Rinse. Repeat.
Rare is one of those strange words that can have exactly opposite meanings, depending on what you are describing. It can be beautiful, like a precious gem carved from rugged stone. But it can also be very, very ugly, like Stage 4 neuroblastoma. In the case of the latter instance, it means 700 children are affected each year. It means children, usually under the age of 5, are diagnosed with a form of cancer. It means scary statistics about survival rates and relapses. In the case of the latter instance, rare is not one of the words you want to hear.
AND SHE IS CHANGING THE WORLD.
The Isabella Santos Foundation wasn’t born just because Isabella died of neuroblastoma. It was certainly a marker for motive. But the work of the team with countless volunteers, supporters, board members, and partners has blossomed into something else – something rare. It is an extraordinary glimpse at how one special, beautiful child’s legacy can help save others. Others who have to face terrible news, whose parents have to tell (and retell) stories of their journey, thrusting themselves back into those haunting moments of fear. It is a window, an opportunity, to see how one child’s legacy can lead to funds for research and treatment, in an effort to change the statistics for the better. It is a unique look at how people can continue to fight even when one battle is lost. And, in this case, the word rare gets to become something positive again.
ISF has donated over $2.5 million to expand the scope of research and treatment, and to fill various needs surrounding neuroblastoma and other childhood cancers. It has partnered with major hospitals, institutions, and charities to support children, families, caretakers, doctors, nurses, staff, volunteers, and all who are – or have been – affected.
And it exists because of Isabella, because of her story. Her motto was: Beat. Grow. Live. “Beat cancer, grow my hair, live my dreams.” The foundation in her name dedicates itself to broadening that so that they -and others- may Beat (the odds), Grow (awareness), and Live (without fear). We will continue to tell her story, but will also tell many more – because these are the real, rare people who need your help.