Worthy Cause

The Molly Johnson Foundation Benefits Special-Needs Kids and Their Families

Writer / Shannon Siders

Photography Provided

Robin and JoJo Johnson turned the unimaginable heartache of losing a child into a charitable effort that has helped dozens of families in the Louisville area and beyond.

Founded in 2012, the Molly Johnson Foundation was created to make a difference in the lives of special-needs children and their families. Robin and JoJo wanted to find a way to connect with special-needs children while also carrying on the legacy of their daughter.

“We started the foundation because we realized there was a need for families with special-needs kids to have avenues to go to for help,” JoJo says. “There were large organizations, but sometimes you have to jump through a lot of hoops to get help from those organizations. We wanted to reach out to people who were struggling with smaller stuff.”

Molly was diagnosed with Wiedemann-Rautenstrauch syndrome at birth in 1996. The rare genetic disorder is a neurological condition found in less than 100 children worldwide. The Johnsons also had a son, Elliott, born with the same condition in 1993, who passed away at just nine months of age.

Children with the condition are affected by many different characteristics, including small stature, poor growth and development, and a depressed respiratory system. Molly was never able to walk, talk or do many of the “normal” things children do, but she lived a full and happy life before she passed away in her sleep on November 2, 2007.

Throughout Molly’s life, the family was turned down several times by insurance companies for medical equipment cost requests. The needs were not always expensive, but the extra cost put a burden on the family.

“We thought people could come to us and we could assign a board member to them, meet with them, and look at their background and what their difficulties are,” says JoJo regarding what inspired the foundation. “We can grant that need to make their life a little better.”

The Molly Johnson Foundation has provided support for numerous families and is often in search of more families to help. The foundation turns to therapists, teachers and doctors who can help connect them to families in need.

Many of their projects involve making homes more accessible for families with special-needs children. Insurance may pay for a wheelchair for a child, but the family might be left on their own to build a wheelchair ramp.

JoJo has provided professional services through his company Don Johnson Contracting to help families renovate their bathrooms and homes to make them more wheelchair-friendly.

“I think we’re at an advantage, because being a contractor and the parents of two handicapped children, we know what works in a home and we can make suggestions,” Robin says. “The child is only going to grow and become bigger, and you have to think about that.”

One of the foundation’s largest projects was a complete home makeover that was ready just in time for a family at Christmas several years ago. Many of the services and new furniture pieces were donated for the house, and the foundation helped cover the rest.

In addition to home renovations, the foundation has also helped three families get a service dog that can detect seizures, provided a portable feeding pump for an 8-year-old boy, and helped with travel costs for families dealing with medical issues out of town.

“Sometimes we pay for airfare or lodging when families have to go out of state to see a specialist,” JoJo says. “Their insurance might cover the medical treatment and hospital stay, but we’ve helped with other costs while they’re out of town, scared to death because of their child. We can help alleviate some of that worry.”

The foundation has been an all-hands-on-deck effort for the Johnsons, and their daughter Ellie joined the board of directors following her graduation from the University of Kentucky several years ago. Ellie was just two years older than Molly, and the only life she knew was with her sister.

Following Molly’s death, the Johnsons knew they wanted to fill the hole in their family, and adopted a daughter named Olivia who was born nine months to the day after Molly died. Olivia also participates in events for the foundation, carrying on the legacy of her sister she never got to meet.

Ellie is now the special-education teacher in the school Molly attended for six years.

“She’s walking in the clouds,” says JoJo, who recalls a conversation with Ellie while she was still in school, saying she’d be excited to end up at Tully Elementary School someday. “She’s so energetic and she’s on the new and cutting edges. She’s so into learning about every one of those kids’ conditions. We’re really proud of her.”

The passion Robin and JoJo have for helping special-needs children and their families is palpable and provides a great source of comfort for the families they help through the foundation.

“Just to meet other families, share stories and know there’s other people out there – that alone helps a lot and is invaluable to us,” Robin says. “We didn’t have any foresight as to how this would play out but it was a great thing. Hopefully we’ll help double the families next year.”

The foundation relies on several fundraising events each year including the Black & Yellow Ball each January, the MJ5K run/walk/stroll in July, and the Beach Bash in August.

In addition to local events, runners have represented the Molly Johnson Foundation at marathons in 14 states including the Kentucky Derby Festival mini & Marathon. The foundation also organizes a golf scramble and other smaller events throughout the year.

“We want to give away whatever we raise because it’s all totally 100% to the kids,” Robin says. “We raise it – it all goes to the kids. We’d rather have nothing in the account because we’ve given it all away, and go out and raise more money.”

More information about the Molly Johnson Foundation, including how to participate in upcoming events, can be found at themollyjohnsonfoundation.org.