Just a few months before what should have been the happiest day of his life, Ben Jackson and his soon-to-be wife were told that their unborn daughter had a tumor that could very well take her life at birth.
Fast forward 11 years, and Emma Jackson is a happy, healthy, fourth-grader with some medical issues, who will be walking the Relay for Life this Saturday and Sunday to raise money so that others don’t have to suffer.
Emma was born with a cervical teratoma. Most of these tumors are benign, but Emma’s was not.
“Usually these tumors are not malignant,” Jackson said. “But Emma was the second recorded case in history at the time with a malignant yolk sac sarcoma, and the other child did not survive.”
For Jackson, who blogs about the first year of Emma’s life on dadofthedecade.com, each day was another moment of abject terror mixed with tears and fear. Today, he would say sometimes it feels the same.
“Most of the time my life is about learning to be dad with moments of abject terror thrown in,” Jackson said. “The most important thing to me now is to raise a kid, not a patient. When you have a kid with a problem you fluctuate between being overwhelmed, full of joy, angry and many other emotions.”
Emma, on the other hand, has lived the life of a typical 11-year-old with the exception of some medical accoutrements, and a nurse who goes to school with her.
“For a kid that has every right to be angry at the world all them time, Emma has taught me how not to be angry,” Jackson said. “Having undergone a laryngeal separation at birth, Emma is unable to speak, and she has a tracheotomy at all times, but with the exception of the tracheotomy she is a smart fun kid who lives a mostly normal life.”
Emma, a fourth grader at Brown Elementary School, does all of the typical kid things including riding a bike, swimming, playing with her friends and taking karate.
“Emma signs and texts and uses text to speech for communication,” Jackson said. “Getting her a cell phone was like meeting a new kid. All of a sudden all of these nuances started coming out in her speech.”
Emma and Ben are part of the Natick Villari’s Studio Relay for Life team. Their goal is to raise $6,000, which is double what they raised last year. Emma has a personal goal to raise $500. If she makes that goal soon, she will bump the number to $1,000.
“It’s really important when you’ve been given a special gift—and I’ve been given a special gift in Emma—to give something back. It’s so important to us to do this so that we can give the gift of health to the next kid. You need to take what you are given, be thankful, and pass it on.”
Today, Emma is amazingly cancer-free and living a life of fullness.
“The only time she seems even the slightest bit sad is when we come up against things she truly cannot do,” Jackson said. “Usually those things involve water. We let her swim, but she cannot dive or do cannonballs. It’s hard for her to watch other kids with the freedom and independence.”
Emma’s future looks bright, and Jackson believes that one day medical technology will find a way for her to live tracheotomy free. In the meantime, he and Emma along with Emma’ mom, Nicole Foxe, live each day to the fullest and try to give back.
The goal of Jackson and the Relay of Life is to ultimately eradicate all cancers. In the meantime, they will walk from Saturday at noon to Sunday at 7 a.m. because they can make a differernce.
To donate to the Relay for Life, please visit www.main.ascevents.org/goto/emmamae. Funds will be accepted until June 30.
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