When Benjamin Sirmon was born twenty months ago, it was obvious early on that something was wrong.
“He didn’t move for the first three months, didn’t blink. We barely got a smile,” his mother, Hillary, said.
Benjamin, who lives in Luling, was diagnosed with a rare genetic disorder called centronuclear myopathy that prevents his muscles from developing normally and results in extreme weakness. However, it allows for normal brain development.
“I contacted many labs across the U.S. and they listed maybe 30 people nationwide that have it,” Hillary said.
Despite a diagnosis that puts Benjamin’s life expectancy at less than 10 years, and his continued reliance on a ventilator to breathe, he has been getting better.
In fact, Benjamin has already made strides and is beginning to communicate through sign language.
“It’s slow but he is definitely getting better and he is extremely happy,” she said.
Although Benjamin will suffer from the condition for the rest of his life, Hillary said her goal is to help him have a happy childhood.
“Walking is not what we focus on. We focus on Benjamin’s happiness and being able to communicate. I’d rather him be able to tell us things and drive a power chair one day,” she said. “I think a lot of people judge your success by walking or running and I think that is not right.”
Part of the goal to ensure Benjamin’s happiness is allowing him to be able to play with other children. When Benjamin visits local parks with sisters Lennon, 5, and Isla, 3, he cannot play with them because the playgrounds in the area are not accessible to children with disabilities.
Hillary wants to change that by constructing a “Miracles to Milestones” playground at the East Bank Bridge Park in Destrehan.
“This playground will not only be great for kids with different abilities, but also for the rest of our community to learn from our amazing kiddos,” Hillary said. “There will be new connections, new friendships, and lessons of patience and love. We were not blessed with Benjamin to ‘cure’ or ‘fix’ him. We were blessed with him to help build a connection among all children and families in our community.”
A design for the park has already been completed by Baton Rouge-based Total Recreation Products and will incorporate wheelchair ramps into an otherwise ordinary playground. With the ramps, children with disabilities will be able to interact with kids who do not have disabilities.
“The groundwork is a pour and play rubberized (playground). The higher the areas of the playground system are, the thicker the rubber areas will be, but it also makes it smooth. So even if a child can push themselves in a wheelchair but they aren’t very strong, they will be able to glide over it,” Hillary said.
She said that by designing the playground to be accessible for all children, she hopes a deeper understanding of disabilities will be formed.
“If kids right now play with kids with disabilities maybe in 20 years when they are making the political decisions they will say, ‘I remember Benjamin and this is someone I need to help.’” Hillary said.
She began her quest last fall and so far has received the go ahead from the parish to construct the playground, plus a pledge that they will provide $30,000 worth of concrete, which will help with the anticipated construction cost of $250,000. Right now, Hillary estimates they will need more than $200,000 to meet their goal.
Now Hillary is looking for help from the rest of the community to raise the remaining funds.
On Nov. 2, The Basketry will join in the effort by donating 20 percent of all profits from that day to the playground’s construction fund.
On Nov. 16, the “Miracles to Milestones” golf tournament will take place at Grand Ridge Golf Club in Luling. All proceeds from the event will go into the building fund for the new playground, which Hillary said could begin construction about a year from now.
“My goal is to do a community build so people in the community can come out when the weather is nice and everyone will have a hand in (the playground’s construction). Even though I do this for my son, really it is for everyone in the community,” she said.
Those who would like to help can contact Hillary Sirmon by phone at (504) 710-6620 or by email at firstname.lastname@example.org.