Joshua suffers from spinal muscular atrophy, a disease that attacks the nerve cells that regulate voluntary movement such as walking, swallowing and turning the head.
The sale was just part of the normal summer routine at the home of Pat Carney, Joshua’s aide from West Woods Elementary School.
"His parents drop him off once a week," Carney said. "I thought we could have a lemonade sale today to raise money for SMA. Every kid in the neighborhood has been here today, and some cars have stopped."
Jessica Zaczek, 10, and her sister Sarah, 8, helped pour the drinks, sell the cookies and hold the signs to flag down passing motorists.
"We’ve raised more than $50 today," Sarah said. Their customers included a thirsty crew from Hamden’s Public Works Department who stopped by to fill up after dealing with a troublesome tree on Melrose Drive.
"Mrs. Carney told me we were doing this today," said Joshua, who admits with a smile to liking both lemonade and cookies. A small sheet of plastic kept his chair’s hand-control box from becoming as drenched as he was. "It’s fun," he said before being summoned back by six or seven friends cavorting in the sprinkler.
Joshua is the son of Harry and Jennifer Tramontano of Hamden. His mother is president of the Connecticut chapter of Families of SMA, a national group that seeks funds for research on treatments and a cure.
"He’s a normal 5-year-old boy," said Jennifer Tramontano. "He loves SpongeBob. He enjoys swimming and horseback riding. He’s a great kid. The only difference is that we chase him around on his wheels while other parents run after kids who can walk."
Tramontano said the group has five other member families in Connecticut, along with families of nine others who have died of the disease.
She said SMA is considered an "orphan disease," in that victims and their families do not generally get the attention — or the levels of funds — that cancer and other illnesses receive.
"We have no Jerry Lewis," she said, referring to the famous spokesman for muscular dystrophy research.
According to the Web site www.curesma.com, Families of SMA has raised $16 million since its founding in 1984.
Volunteers are trying for $14 million more in the next three years.
Carney said they would try to have a sale every week for the rest of the summer. And even her 11-year-old son Jonathan, who also goes to West Woods, counts himself among Joshua’s friends. One example involves a walk in Hamden this past spring that raised $30,000.
"Jonny went all over the neighborhood reminding people about the walk," said neighbor Gladys DeLucia. "He went to every house on every street telling people and collecting money. Even in the rain. Their whole family loves Joshua."
Joshua has a 4-month-old brother, Daniel, who is healthy. Tramontano said that since she and her husband are both carriers of the genetic disease, they have a one-in-four chance of having an affected child.
There is some hope on the horizon in terms of treatment.
"Right now, Joshua is involved in clinical trials that take place in Utah," she said. "We go back and forth every three months. He’s receiving a drug we hope will stop the progression of the disease and reverse the impact it has had on him."
She also said Families of SMA is working with a pharmaceutical company to develop drugs that would treat the illness rather than cure it.
"We’re very close to a therapeutic treatment," she said.
Michael Gannon can be reached at firstname.lastname@example.org or at 789-5710.