Two-year old Benjamin Sirmon’s life depends on this ventilator and the constant love of his mother, Hilary.
“Benjamin was born a couple of weeks early,” said Hilary. “He was blue and not breathing. We stayed at the NICU for 3 months, and still didn’t know what he had or his diagnosis. It wasn’t until a year and a half later that we found out his exact diagnosis.”
He has rare genetic disorder that causes extreme muscle weakness. He’s been on a ventilator since birth and a feeding tube since he was one month old. But despite the machines, Hilary says he learned to thrive on it.
“He plays and he’s learning how to communicate through a device,” she said.
Hilary is determined to take her son to a park where he can play with his three siblings.
“His sisters would love to have a place for them to play together, we’ve sat with Benjamin on the side too many times,” she said.
She helped paved the way for an all-inclusive park in Destrahan, LA, near the New Orleans area — called the ‘Miracles to Milestones Playground.’ She approached the parish about building such a park, and it was completed within a matter of months. Just as the playground neared completion, the family ended up relocating to Monroe.
But as fate would turn out, the West Monroe Civitan Club is already paving the way for a similar park in West Monroe.
“It’s just meant to be. Ben’s been able to meet people and they’ve been able to meet him and spread his story,” said Hilary.
They just need the funds to make it happen.
“Hopefully it will be this year, but we’ll have to wait and see,” said Matt West, a member of the Civitan Club.
They want to build the West Monroe Civitan Smiles Park within Kiroli Park in West Monroe. The 3/4 acre of land has already been allotted and the city of West Monroe has even donated a handicap accessible pavilion for the playground.
So far, they’ve raised $370,000 — about a third of the way there — towards their goal of just over $1.1 million. But construction cannot begin until they clear the gap.
The Smiles Park won’t just be wheelchair accessible, it will be all inclusive. From children with different abilities to wounded warriors, people of all abilities will be able to play as one in the smiles park.
West says they’ve spoken to families as far as Mississippi who are willing to drive hours to experience this park.
“A lot of your physical therapists will start doing their work out at the playground from our understanding, versus in their office, so you’ll start to see some transition,” said West.
Shane’s Inspiration, a non-profit that builds all inclusive parks across the country, is helping to design the playground.
“Shane’s Inspiration will help implement programs in our communities to show able bodied children how to play with, and that it’s okay to play with children of different abilities,” said West.
Hilary is taking her son to local schools so that children can learn from him.
“With education comes understanding, and with understanding comes advances and relationships and technology,” she said. “So the more people understand how wonderful a kid like Benjamin is, the easier it will be as he gets older.”
In the meantime, Hilary says she will continue to push for donations so that this park can become a reality for her son.
“Wednesday, we had a scary moment with Benjamin, to the point where I thought i might have lost him,” she said. “And I just want this done as soon as possible so he can have a place to play, sooner than later.”
The park has hundreds of thousands of dollars to go before reaching its goal.