Running to make a difference

What does running and a child’s death have in common?

For close to 150 people, running.

And running helps them make a difference in the lives of special needs children.

The group is running in the Kentucky Derby Festival’s miniMarathon and Marathon to raise money for “The Molly Johnson Foundation.”

This idea was born from 28 friends and family members who completed the Chicago Marathon last fall running to help launch The Molly Johnson Foundation.

More than 45 friends participated by cheering the 28 competitors along the 26.2-mile course.

So, what is The Molly Johnson Foundation?

It’s a group dedicated to helping children with rare illnesses, right here in River City.

Robin and Jojo Johnson founded The Molly Johnson Foundation in honor of their daughter, Molly, who passed away November 2, 2007.

Molly was born with a rare genetic disorder called Wiedemann–Rautenstrauch Syndrome, a neurological condition diagnosed in less than 100 children worldwide.

Children born with this condition are affected by many different characteristics including being small in stature, poor growth and development and a depressed respiratory system — all stemming from the lack of neurological development.

Molly was born in 1996 and diagnosed at birth with this condition. Her parent’s first child, Elliott, was born in 1993 with the same condition and passed away at 9 months.

Nearly all of the children diagnosed with WRS pass away in early childhood.

Molly lived a very full life of 11½ years and passed away in her sleep.

Her parents decided to turn a tragedy into good by launching a foundation to help others with similar problems.

Through their own experiences of raising two special needs children, The Molly Johnson Foundation was created to assist families of special needs children.

These families often face many obstacles that the foundation can help them overcome.

Fresh of the experience in Chicago, the group set its next goal on the Derby Festival miniMarathon.

Its goal was 100 Runners, running 13.1 miles all for one cause.

Each runner has the personal goal of raising $100 in sponsor support to reach the overall goal of $10,000.

The recruiting process started and the original goal of 100 runners was reached in 10 days. The number stands at 124 and is still growing.

“Team Molly” will also consist of nearly 100 supporters at several cheer zones along the course to encourage all of the competitors. “Team Molly” will also include approximately 20 walkers competing in the event.

The majority of the competitors are members of St. Michael Catholic Community outside of Jeffersontown.

The pastor of this faith community, Fr. Dick Sullivan said “he is proud of how many of the parishioners are involved in such a good cause to make a difference in the lives of the special needs children and their families.”

The Molly Johnson Foundation has many other fundraising projects in the works and plans to announce the next goal at an appreciation party to thank the competitors the night of the miniMarathon.

“Team Molly” members train weekly with the organization of one of the foundation board members, Bob Ford.

The group meets on Saturday mornings at daylight to run their weekly “long runs,” as most who are training for a half or full marathon do.

Ford said “the group consists of men and women and usually has 10 to 25 participants running all sorts of distances.”

 He said there is a pace for everyone and the camaraderie formed on those Saturday morning runs is incredible.

“The most important thing is to help others who have many obstacles to overcome,” he said. “Many of which most of us will never have to deal with. When I get fatigued and worn down I think of Molly and all she had to overcome and I’m inspired to press on.”

One little girl who couldn’t talk, couldn’t walk, couldn’t do anything for herself has inspired so many to make a difference because of the life lessons she taught them.