Molly Johnson Foundation provides relief for families with special needs children
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, who live in Fisherville but attend St. Michael Catholic Church in Jeffersontown, 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 for medical equipment requests. The needs were not always expensive, but the extra cost put a burden on the family.
“We thought people could come to us, we could assign a board member to them, meet with them, look at their background, what their difficulties are” says JoJo on what inspired the start of the foundation. “We can grant that need to make their life a little better.”
The Molly Johnson Foundation has provided support for nearly 30 families, totaling more than $250,000, and they have not had to turn down any families locally. In fact, the foundation is often in search of more families to help and turns to therapists, teachers and doctors who can help connect them to families in need.
Many of their projects surround making homes more accessible for families with special needs children. Insurance may pay for a wheelchair for a child, but the family is 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 for a Jeffersontown family that was ready just in time for Christmas a couple years ago. Many of the services and new furniture 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 eight-year-old boy and helped with travel costs for families to deal with medical issues out of town.
“Sometimes we pay for airfare or lodging when families need 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 last year. 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, Olivia, who was born nine months to the day after Molly died. The now 9-year-old Olivia also helps participate in events for the foundation, carrying on the legacy of her sister she never got to meet.
“She’s walking in the clouds,” says JoJo, who recalled a conversation with Ellie while she was still in school saying she’d be excited to end up at Tully 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 signature fundraising events each year, including the Black & Yellow Ball. The sixth annual event will take place Saturday, January 27, at the Marriott East in Jeffersontown. Organizers are hoping to top the $84,000 raised at last year’s event and are aiming for a crowd of 500 attendees.
In addition to the ball, runners have represented the Molly Johnson Foundation at marathons in 14 states, including the Kentucky Derby Festival Marathon and Mini Marathon. The foundation also hosts a 5k, golf scramble and other smaller events throughout the year.
“We want to give away whatever we raise because it’s all 100 percent 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 purchase tickets for the Black and Yellow Ball, can be found at themollyjohnsonfoundation.org.