The first dance recital. Missing front teeth. High school graduation. All parenting milestones that Kathy Giusti thought she would never see.
At 37, this
"I thought, if I could just jumpstart research maybe I would live long enough for her to remember me," says Giusti. Instead of becoming paralyzed with fear, this Harvard MBA created an innovative foundation while making plans for her family, which included the brave choice to give Nicole a sibling.
"I decided that I would have another child, even knowing that my life might not be that long." Now,her kids are teenagers. The Multiple Myeloma Research Foundation has raised $200,000,000. And Kathy Giusti is 53 and in complete remission.
"Never in my wildest dreams did I think I'd still be here and that we'd be one of the best foundations in the country," says Giusti, who had a stem cell transplant in 2006 with her twin sister, Karen, as the donor. Even though it was a grueling and isolating process, Karen never hesitated to help.
"She saved my life," says Giusti. Also, through the foundation, this former pharmaceutical executive used her knowledge to create solutions for herself and others dealing with this tough
"We built a community of academic centers and pharmaceutical companies and as a result of the funding and this teamwork we created, we've seen four drugs approved by the FDA," says Giusti.
Working tirelessly for the foundation and going through treatments meant that Giusti wasn't always at Nicole's school functions or her son David's sports games, but she believes they understand.
"I was so lucky to raise two really independent children who over the years have watched me and said, 'You know what? You've taught us so much that one person really can make a difference'."
Giusti always tried to speak honestly with her kids about her illness but she also never wanted to scare them.
"You find out with children that you just answer the questions they have. You don't go beyond that," she says, now glad that she didn't attempt to predict the future that has taken so many unexpected turns. Well-known figures, such as
Giusti is looking forward to celebrating the MMRF's continued success at an upcoming 5K Race for Research on June 10 in New Canaan, which she will attend with her family.
"Now I look back and think of all the moments that I've seen," she says with emotion, recalling a recent afternoon with Nicole. "I stood there as she opened her college acceptance letter." Giusti has filled her home with photographs, pictures of her hugging Karen, Nicole, David and her husband, Paul. The images exude their love and appreciation for one another. Their smiles convey a sincere, deep gratitude for the unexpected gift of this amazing life that they have been able to live together.
To hear more about Giusti's inspiring story tune into today's Fox CT Morning News. To read more from Fox CT reporter Sarah Cody and freelancer Teresa Pelham, go to http://www.ctnow.com/mommyminute