Imagine being born with an oversized tongue that makes breathing and eating a constant chore. Imagine starting life with an oversized pancreas that pumps an excessive amount of insulin, creating a wide range of unexpected health issues.
In fact, try to imagine being born with an abnormally large organ of any kind – tongue, liver, kidneys – and how this might affect your life.
Children with Beckwith-Wiedemann syndrome, otherwise known as BWS, live with these challenges every day. And it’s not the only health concern they face.
They’re also at a much higher risk of developing childhood cancer.
Maya describes the day she was diagnosed with Wilms tumor as “the worst day ever.”
It was July 6, 2016, one month before her seventh birthday. Doctors immediately scheduled surgery to remove her left kidney, where the tumor was located. Two weeks later, Maya began her treatment plan, which included radiation and chemotherapy. But shortly after treatment started, more aggressive cancer cells were found in her tumor and Maya was placed on a more intensive chemotherapy plan.
Ever since Joe and Erin Martorano’s daughter Sara was diagnosed with childhood cancer, St. Baldrick’s has been part of the family. From shaving to organizing events and starting a St. Baldrick’s Hero Fund, they’ve done it all. Read on to find out why.
The Martorano family smiles together during Sara’s treatment for cancer. From left to right: Anna, Erin, Mary, Joe and Sara.
Joe Martorano first shaved his head with St. Baldrick’s in 2008, alongside his colleagues at the Chicago Police Department. He didn’t have a direct connection to childhood cancer at the time. Fundraising for kids’ cancer research just seemed like the right thing to do.
Later that year, that would all change.
Miriam’s son Holden was diagnosed with Stage IV Wilms tumor in 2010. Now, three years after his death, Miriam thinks of her son whenever she hops into her car. Why? Read on to find out how Miriam has turned something we see every day into a memorial for her son and a unique fundraiser for childhood cancer research.
In October 2010, St. Baldrick’s 2016 Ambassador Holden was diagnosed with Wilms tumor. He lost his left kidney and endured intense chemo and radiation treatment. Holden showed no evidence of disease for about a year, but then a tumor was found on his other kidney. Before he could receive a kidney transplant, cancer was found in his lung.
In 2012, we celebrated a year of remission for our son Holden with our first head-shaving fundraiser for the St. Baldrick’s Foundation.
Several months after that event, Holden was back in treatment for the same cancer on his other kidney. When cancer stole him from us in May 2014, we decided that a Hero Fund with St. Baldrick’s was the best way to honor Holden’s memory and work to fund research. We have organized head-shaving events and Do What You Want fundraisers since then, and we are always looking to do more.
Honored Kid Aurora was diagnosed with Stage III Wilms Tumor when she was just 15 months old. Her mom, Kelly, explains how cancer took away Aurora’s chance at a normal childhood — and all the ways Kelly and her family are fighting to take it back.
Upon receiving my daughter’s diagnosis, I immediately began to grieve the loss of her childhood, one that was supposed to be beautiful and normal.
When 2010 Ambassador Sara was diagnosed with Wilms tumor in 2008, it was a birthday surprise her family did not expect. The now healthy 11-year-old and her family are still committed to fundraising for childhood cancer research, and they recently took a trip to Northwestern University to visit the St. Baldrick’s researcher her Hero Fund is helping support. Her mom tells the story below.
Sara, bottom left, and her family at a St. Baldrick’s event in 2013.
I feel sick with guilt looking at this picture of our daughter Sara blowing out her fourth birthday candles.
29 days later, cancer barged into our home and attacked Sara.
Dr. Ralph Ermoian is a radiation oncologist and St. Baldrick’s infrastructure grant recipient at the University of Washington. He explains what proton therapy is, how it works, and how this treatment is helping kids and adults with cancer.
What is proton therapy?
Proton therapy is a type of radiation used commonly for children with cancer. Like traditional x-ray radiation, it is used to treat cancers, but proton therapy affects less of the healthy tissue surrounding the tumor.
What is Wilms tumor?
Wilms tumor is a cancer of the kidney. It is one of the most common types of childhood cancer, with approximately 500 new patients a year in the United States alone.
Holden loved every minute of life. He was relentless in his pursuit of being a “normal” kid, even during intense treatment for Wilms tumor — riding the bus, going to first grade, playing baseball, being a friend.
Austin is now 8 and has been cancer free for five years.
Our boys were 3 ½ and 10 months old. We lived in a different house. We were different people.
Because it changed everything.
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