Saoirse Fitzgerald's Parents Start Cancer Fund in Her Memory

One hour before 18-month-old Saoirse Fitzgerald passed away on Dec. 13, 2011, her father Mike told her he would do everything in his power to prevent other children from suffering with Neuroblastoma. 

Now, just six months later, with a Board of Directors established, and the proper legal work completed, the Fitzgerald Cancer Fund has been deemed an official non-profit organization, and the quest to put an end to Neuroblastoma has begun. 

Saoirse (pronounced Seer-sha, meaning "freedom" in Gaelic) was first diagnosed with Stage Four, nMYC amplified Neuroblastoma in May 2011, just three months after her mother, Kezia, had began treatment for an unrelated cancer, Stage Three Hodgkin's Lymphoma. Less than 24 hours after Saoirse entered the Children's Hospital in Boston, she began chemotherapy.

At about 10 a.m. on Dec. 13, the Fitzgerald family shared with their friends and followers on Facebook the heartbreaking news, "Our baby has no more pain today. She fought the whole way through."

"After Saoirse passed, we decided we wanted to keep the foundation going so we could help other families and help to find other treatments for Neuroblastoma," Mike said. "The work that we're doing, the money we're collecting is going directly to our missions. Everyone who's in it is in this because their heart is in it."

Kezia, Saoirse's mother, said the Board of Directors is a combination of really good friends. "Some we have known for a long time, some we had known before Saoirse got sick, and some we met when I started blogging," she said. "It's a group of people who are all connected to us in different ways and all have different viewpoints, which is really awesome."

On June 18, family, friends, and supporters will floodthe Today Show plaza in New York City, equipped with posters and photos of children who have Neuroblastoma, to raise awareness for the fund. "Some are survivors, some are still fighting, and some are angels," Kezia said. "We want to show the true face of the disease, and that there is a person behind the cancer. They're kids, and they're little."

The fund's mission, as described by the fund's Vice President Jessica O'Hearn, is to "help parents who have just gotten their [child's] diagnosis, help them with financial resources, treatment options, and help them connect to a community of other parents."

The mission will support doctors thinking outside the box, and will include researching less toxic treatments, so children can have a better quality of life post-treatment. Many kids, Jessica explained, have hearing imparements, or are on medications for their lives, following cancer treatments.

If the fund decides to support a trial treatment "we want to know the research behind it," Kezia explained. "We want to know why its going to work better, we want to meet the doctors, researchers and scientists who are putting it together, and be able to answer questions to parents who are learning about it. Parents who just got a devastating diagnosis aren't going to have time to do the legwork."

Mike said the  treatments used for Neuroblastoma haven't changed in about 40 years, and the survival rate is slightly decreasing.

"Something drastically has to be changed," he said. "Why aren't we going to be the ones to do that? When I promised Saoirse right before she died that I would work so that no other kid would have to go through this, I meant it, and I was serious. We're not letting anybody stop us."

Make Coffee, Make Change 

The Fitzgerald Fund's first fundraiser will be held on Friday, June 29.

The concept is simple: instead of purchasing a coffee at a coffee shop, make it at home, and donate the difference. 

"There's a lot of different options and it makes it accessible to everybody," Kezia explained. "It means that people who may not have hundreds of dollars to donate can still make a difference. The mentality behind is that if 100 people donate $100, that's a lot of money, but if 10,000 donate $3, that's a lot more money." 

The goal, Mike said, is to make it accessible to everybody and something that everybody could connect to in some way. "If a lot of people do a little bit it can make a big difference."

Fitzgerald Cancer Fund Links:

• Website
• Facebook
• Twitter
• Kezia's Blog
• Mike's Blog