A Michiana couple who lost their son earlier this year is using their pain to make a positive impact on others.
Mason Boone died from complications of Smith-Lemli-Opitz syndrome in April. He was only 20 months old.
The rare genetic condition prevents the body from producing the cholesterol needed for normal growth and development. In Mason’s case, it resulted in several complications – including holes in his heart and an underdeveloped brain.
“He had several surgeries,” said Mason’s mother, Kay Marcum. “Probably 30 to 50 in 20 months.”
It meant the family spent a lot of time at Riley Children’s Hospital in Indianapolis. But, despite the frequent visits, Mason lost his battle just months before his 2nd birthday.
“I would have given my life for him to have his,” Marcum said. “That's just not how it works.”
While she and Mason’s father, Mark Boone, try to cope with their grief, they’re focusing much of their attention on helping other families.
During one of their trips to the hospital, they came across a man who was handing out books to children who were being treated. On the last page, there was a picture and a message in remembrance of a child who’d lost her battle with a disease.
“Ever since we got that book, it has stuck with me that if something were to happen to Mason, I want to do that,” Marcum said. “I want to bring the slightest bit of joy to any child or any family. I want to give them a gift so they know they're not alone.”
So, the couple is collecting some of Mason’s favorite toys to donate to the NICUs at Riley and St. Joseph Regional Medical Center. They’ll hand out 67 total – one for each bed in the NICUs.
This year, they’ve decided to donate Rhino Oballs, which are designed so infants can easily hold them.
“We want to make an impact on the lives of these people in his memory because we want him to be proud of us,” Marcum said through tears. “We want him to know that he's not forgotten.”
The couple plans to deliver the toys to Riley in August and is looking forward to seeing the smiles on children’s faces. While it can’t make up for their immeasurable loss, Marcum says bringing others joy is comforting.
“It gives me another purpose,” she said. “I don't have the purpose I had with having my son. But, with this, it's second best.”
Mason would have turned two on July 18. In honor of his birthday, family and friends gathered at Fish Lake to launch balloons and lanterns into the sky.
Anyone who wants to help with future donations to Riley and St. Joe can do so by visiting the ’Team Mason’ website.