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Hopkinton family hopes for a lift

  • Geting in and out of the family van has become a painful experience for both mother Luciente Salce and her son Constantine as she puts him into the back seat at their Contoocook home on Wednesday, December 19, 2018. GEOFF FORESTER—Monitor staff

  • The thought of getting in and out of the family van is now a painful experience for Constantine Salce and his mother Luciente as he grows up, Now 11, he is heavier and is difficult to lift into the vehicle. GEOFF FORESTER—Monitor staff

  • Luciente Salce carries her son Constantine into the family van as her other children play in the driveway of their Contoocook home. GEOFF FORESTER—Monitor staff

  • Constantine’s muscles are weak but his mind is strong, and he knows how much a new lift would help him and his mother. GEOFF FORESTER photos / Monitor staff

  • Luciante Salce adjusts her son Constantine, 11, in his chair in their Contoocook home. GEOFF FORESTER / Monitor staff

  • Getting in and out of the family van has become a painful experience for both mother Luciante Salce and her son Constantine as she carries him out of the back seat at their Contoocook home on Dec. 19. GEOFF FORESTER / Monitor staff

  • Getting in and out of the family van has become a painful experience for both Luciente Salce and her son, Constantine, as she puts down the metal ramp to put his chair into the back of their van at their Contoocook home Wednesday.

Monitor columnist
Published: 12/29/2018 7:20:40 PM

The storyline in Hopkinton emerged when she lifted her son –75 pounds and growing – and placed him in the van.

“Ow, Ow!” said the boy, motionless, legs dangling.

“Sorry, sorry,” answered his mother, carrying her son like a stack of firewood.

The mother’s face told you she was in pain, too. Physical and emotional pain.

This is their routine, that of Luciante Salce and her 11-year-old son, Constantine. A routine steeped in pain. Lift her son into the van, a van without a rising and lowering mechanical platform.

Then, later, lift him back into his wheelchair. Pain, pain, pain.

“It gets frustrating,” Luciante said. “It gets tiring.”

Constantine was born with spinal muscular atrophy, or SMA, a disease that stops neural impulses from reaching his muscles. Devoid of muscle contraction, Constantine’s arms are weak, his elbows and forearms forever resting on the wheelchair’s armrests. His legs are weaker still. His thinking and speech patterns are fine. He can’t move, though.

That, of course, is bad enough, but the pain extends to another area. The pain of a mother trying to provide a good life for her son, give him a sense of normalcy, but unable to do so because funding isn’t there to help change their van into something that can create easier accessibility, in and out.

And Constantine is still growing. He’s getting heavier. Frustrated, too. Just ask him.

I did. I never got the chance to finish my question.

Constantine, do you ever feel…

“Jealous? Yeah,” he answered, sitting in his wheelchair in his living room, after that painful driveway demonstration.

His mother jumped in.

“We try to make it where he can do things,” Luciante said. “He’s usually pretty happy. He says he’s jealous, and I’m sure he is. But he’s pretty happy doing things differently.”

She’s tried to open doors, create awareness, shout from the rooftops so someone will understand that grants and some sort of financial aid should be funneled toward kids with physical disabilities. The kind that requires special help, expensive help, to get in and out of a vehicle.

Luciante’s research tells her that there’s an ironic force at work here, that money needed to modify the family van with an elevator-like lift to take care of Constantine’s needs would be available from an agency like Community Bridges, but only if he had physical and mental disabilities. But that’s not the case. Constantine’s mind is sharp, his reasoning and responses lucid.

Elsewhere, Partners in Health Child and Family Services simply does not have enough funding for this sort of expense, which can amount to $45,000 for a new van or $20,000 for work on an old one. The Salces have gotten money to expand a bathroom door for wheelchair access and to clear space in there to make it easier to move around, but that’s it.

Luciante-fueled fundraisers and a GoFundMe page have sparked interest. She ran a marathon eight years ago for the first time in her life, raising money to find a cure for SMA.

More recently, Luciante sought help from her state representatives in Hopkinton – Mel Myler and David Luneau – sitting with them at a local cafe earlier this month, introducing them to her son and his hardships and his hopes, enlightening them on what is and isn’t offered in the way of assistance.

They knew nothing about this going in, and Luciante said they showed genuine concern. They made all sorts of suggestions, each a path already well traveled.

Try this group. Call that group. Click on this link. Click on that link.

“We’ve exhausted every avenue of the last 10 years of his life,” said Constantine’s father, Dominic Salce, a corrections guard at the state prison.

“Obviously there is a problem with the system,” said Rep. Myler. “We need to have those who are in that discipline to give us ideas of what we might do legislatively to remedy the spot Constantine finds himself in.”

Added Rep. Luneau, “Mel and I did advanced work to get a sense of the landscape for what is available from the nonprofit or state programs, and that was discouraging to us. Every family has difficult challenges, but for Constantine it was, ‘Wow.’ We need to make sure they have our collective support to provide for him so he can grow and flourish.”

Constantine has grown where possible. He’s on the school chess club and beats his father at the game Risk. His mother covers his hands with hers to help him reel in fish. He has Star Wars, Red Sox and Pokemon stuff on his bedroom walls.

And he knows the cards he’s been dealt, knows that red tape might delay his chances of receiving the vehicle needed to make his and his mother’s life easier.

“I’m hoping for other families who have kids like me will get an accessible van,” Constantine said, shortly after that driveway demonstration with all the pain involved. “But this is for us, too.”

He has rods implanted in his back to stretch it out, provide balance so the mucus won’t pool up on one side of his lungs.

When that happens, Luciante pushes on his belly to induce coughing, a raspy, gurgling sound that tells you he needs relief, an outlet for congestion that he can’t clear himself.

But with all the complications and the medications and the surgeries and the trips to Boston hospitals and the complete lack of mobility and the pain of watching his three siblings run and play, the daily driveway routine packs the biggest punch in the life of this 11-year-old boy.

Everything hurts when mom transfers her son from his wheelchair to the back of the van. The rods in his back cause pain, his feet hurt when they bump into the side of the vehicle, his neck hurts when it’s not supported properly, mom’s own back hurts from the weight she’s carrying and her heart hurts from that very same weight.

“Ow,” says the son.

“Sorry,” says the mom.

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