When Will Johnson was born in 2006, he weighed just 21 ounces and fit in the palm of his father’s hand.
Though due in July, it was only February. Will and his twin brother, Sam, were born at 23 weeks, the earliest period of gestation when a hospital is “compelled to use … extraordinary means to save them,” said Frank Johnson, Will’s grandfather.
Though Sam did not survive, Will is now a healthy 9-year-old who is the inspiration behind the Iredell March of Dimes team that raised more money to help infants than any other team in the U.S. at this year’s march, said Johnson. The team, he said, even beat a team from the Hollywood area that includes a senator and has support from Jennifer Lopez, an advocate for March of Dimes.
Team Will, which was created by the Johnson family while Will was still in the neonatal intensive-care unit, has raised more than half a million dollars in its 10 years of marching, said Anna Johnson of Statesville, Will’s mother.
“Everyone was thinking of ways to help (while Will was in the NICU) and there’s really nothing you can do, so they started a team and collected money for March of Dimes,” she said.
This year’s team, with about 80 members, raised about $106,000 for the organization that helped Will survive premature birth. The team includes people from all over the Charlotte and Iredell areas, as well as friends and family of the Johnsons.
Team Will raised money with the help of two Rotary Clubs from Statesville, the support of many local businesses and support from the Carolina BalloonFest.
“I think the mission just speaks to a lot of people,” said Anna.
“People really turned out their pockets and robbed their piggy banks this year.”
The mission of March of Dimes is to “help moms have full-term pregnancies and research the problems that threaten the health of babies.”
In a speech Frank and grandson Will Johnson gave to March of Dimes supporters earlier this year, Frank described the NICU as “one of the scariest places on earth.… Life or death is always hanging in the balance.
“We found out there that the balance in that place is increasingly tipping toward life as cutting-edge treatments and medicines become available because of research and development funded by people like you through the March of Dimes. Like you, we wanted to do something, so we committed to this organization.”
In situations like the Johnsons, the nonprofit steps in to help when something has already gone wrong. Anna noted that March of Dimes was also there to help her take preventative measures to ensure her next pregnancy did not end prematurely. She had a normal second pregnancy, giving birth to the now 7-year-old Emma.
The first year Team Will walked, Anna and her husband – also named Will – were not able to walk the 3-mile course because they were still in the hospital with son Will. He came home after four months of intensive care, just four days after his due date. Anna said bringing him home was both “exciting and terrifying.”
She said, “He’d been watched by an outstanding team of doctors for so long.… We took him home and had monitors and oxygen (tubes) at home to manage. There were so many different appointments and therapies. It’s so far from over when you take them home.”
It took about two years for things to become more normal and to be able to safely take Will out into the world.
“At that time I couldn’t imagine life being as normal and healthy as it is now,” Anna said. “There were days where I thought there couldn’t be a happy ending to this, but there is and it’s awesome.”
Her advice to anyone coping with a premature birth is “Have faith that things can turn out better than you can imagine.… Fight for interventions when needed. If we’d not tried or had given up, he’d not be where he is now.”
She also said not to fear asking for help or second opinions and surrounding yourself with people who will support you and your family.
“Being involved with March of Dimes has been great, too,” Anna said.
Marjorie Dana is a freelance writer. Have a story idea for Marjorie? Email her at firstname.lastname@example.org.