Another Article!

Here is great article from the Manchester Union Leader about us!!!  There wasn't a link online so I just copied it here.


Motivated by a cause:
Luciante Salce is raising money to fight spinal muscular atrophy.
By MELANIE PLENDA
Sunday News Correspondent


HILLSBOROUGH — Constantine Salce watches his sister, Aurelia, twirl and spin in front of his chair. The toddler dances and hurls herself into wild shapes and contortions with an abandon to be envied.
But Constantine, 3, doesn’t envy her.
Afflicted with spinal muscle atrophy, Constantine can’t, and may never, do what Aurelia does. He can only sit in his chair and watch. Yet without a hint of jealousy, he laughs from deep in his belly, enjoying all his sister can do.
“He’s just such a happy, chill guy,” Luciante Salce, the children’s mother, says of her son. “Aurelia dances for him, and she does things he can’t do, and it just makes him laugh and laugh. She moves around enough for the both of them.”
Constantine can’t use his legs, but Luciante can, and she doesn’t take that for granted. Instead, she has trained for months in advance of Sunday’s Manchester City Marathon, hoping to draw attention and funds to an often misunderstood disease.
The Spinal Muscular Atrophy Foundation defines SMA as a “rare, inherited disease characterized by muscle atrophy and loss of motor function, caused by the absence of or defect in the Survival Motor Neuron 1 (SMN1) gene.”
The neurons or cells associated with the gene are critical carriers of electrical and chemical messages to the muscle cells, affecting swallowing, breathing and movement in the limbs. If the neurons don’t work properly, the muscle cells don’t work properly. This causes the muscle cells to become smaller, degenerate and eventually die.
It is estimated the rate of spinal muscular atrophy births is between 1 in 6,000 and 1 in 20,000.
Luciante said Constantine appeared fine when he was born.
“He ate like crazy and was just a really content, really happy baby,” she said.
“I didn’t really notice that he didn’t use his legs very much. He was my first child, so I didn’t really know exactly what was normal.”
When Constantine was about 6 months old, Luciante’s mother pointed out that the boy didn’t use his legs much. A slow, burning panic crept into the back of Luciante’s brain. It wasn’t one big thing that suddenly signaled something was wrong, she recalls, but a million subtle things. As she did research online, she kept seeing SMA come up, but she hoped for the best.
“I would be running at the gym, going back and forth between, ‘He’s fine; he’s just slower than usual; kids go at their own pace’ and being freaked out,” she said.
Luciante and her husband, Dominic, took their son to the doctor, who in turn referred the couple to a neurologist. It took a month to get the results.
“That month was actually harder than actually finding out what was wrong,” she said.
During that time, the Salces learned Luciante was pregnant again. A week later, the neurologist told them their son had a disease with no treatment, no known cure and a grim prognosis.
“He told us (Constantine) probably wouldn’t make it to his second birthday,” Luciante said. “We cried for a day. But then we were, like, ‘OK, he has this.
Now what are we going to do about it?’ That was really the turning point for us.”
Since the diagnosis, the couple has learned to adjust their lives to meet Constantine’s needs. Luciante stays home with him full time. They’ve also discovered treatment techniques to keep Constantine healthy and help prolong his life, which — because he has Type 2 SMA — is expected to be as long as 25 years. The family works with him daily, doing his physical therapy, clearing his lungs and taking him for checkups in Boston.
Luciante said even Aurelia gets involved, helping to push her brother in his chair, picking up his head when he can’t do it himself, or just quietly occupying herself so her mom can take care of Constantine.
With one less salary coming in and regular doctor bills that insurance can’t cover, Luciante said, money is definitely tight. But she doesn’t waste time dwelling on that.
“They are very independent people who never ask for anything from anybody,” said Beth Allen, who works with the family through the Department of Health and Human Services. “I just think it’s amazing and remarkable how the whole family has transformed the situation into a positive. ... They just keep going and do what needs to be done.”
Luciante said that since the diagnosis, the family has also become dedicated to helping find a cure for SMA. Last year, she and a friend held a spin-a-thon at Keene State College. This year, she decided to let her own feet do the work.
A longtime runner, she’s stepped up her training by following an online regimen in preparation to run Manchester City’s 26.2 miles.
“The kind of people they are, I’m sure it’s not easy for them to put themselves and their story out in the public eye like this,” Allen said. “But their goal is to get help for their son and for the bigger cause. And I’m sure they are exhausted most of the time. But they continue to get up every day, do what needs to be done. . . . They are such role models.”
Although it meant coordinating schedules with her husband, who works nights as a corrections officer, Luciante stuck with her training program. She also started a weekly blog to let supporters know she was working hard for their donations.
“They are so close — so, so close to finding a treatment; all they need is the funding to do it,” she said. “I mean, finding a treatment would be huge — not only for us, but for all the families going through this.”
But first and foremost, she’s running for Constantine. “He doesn’t have this huge, long life where there’s time to wait for a cure,” Luciante said. “My hope is that they find it within the next few years so he will be able to really grow up and enjoy his life.”


For more information on how to donate to Constantine’s treatment and on finding a cure for SMA, visit Luciante Salce’s blog at http://constantinescure.blogspot.com.