Fundraiser stretches across country

PHOTOGRAPHER: Michael Goot

Nannette Boscarino of Rotterdam was blown away by the number of people crowding into the gymnasium of St. Gabriel’s Church for a fundraiser for her 9-month-old grandson, Magglio, who suffers from a rare disease.

“They don’t even know our grandson,” she said, holding back tears.

Magglio has Pompe’s Disease, which is a rare disorder that affects his body’s ability to process an enzyme used to break down a type of sugar. Magglio is her son Mark’s child. Mark, a 1993 graduate of Mohonasen High School, and his wife Becka live in San Mateo, Calif.

More than 700 people attended the event, which featured a Giffy’s chicken barbecue, live auction and silent auction, clowns, music and raffles.

Boscarino said she just visited her grandson, who is taking a drug called Myozyme to build up his enzymes.

“He’s getting strong but he’s very weak,” she said.

Speaking on a cellular phone from California, Becka Boscarino said she is very grateful for the fundraiser.

“We are so touched by the love and support from coast to coast,” she said.

She said she and her husband noticed Magglio’s problems at about five months old. “He was always congested and I took him to the doctor three different times,” she said.

At first, it was dismissed as a common cold. Then, the doctor took an X-ray and found that his heart was enlarged, which scared the couple.

“We thought at first he needed a heart transplant,” she said.

Eventually, they found out that the enzyme was the problem.

The disease occurs about one in every 40,000 births.

Babies with the disease have mutations in a gene that makes an enzyme called alpha-glucosidase (GAA), which helps break down glycogen — a type of sugar the body uses for energy, according to the National Institute of Neurological Disorder and Stroke Web page.

This mutation causes little or no production of this enzyme and a buildup of glycogen throughout the body resulting in poor weight-gain, feeding problems, muscle weakness, floppiness and head lag.

Nannette Boscarino said his treatments started smoothly, but then he would start crying and turning blue and the doctors would have to stop the procedures.

Becka Boscarino said the doctors now give Magglio some medicine before the treatment so the side effects are somewhat lessened.

She said that Magglio tries to be a normal child. He loves to play on a new swing set his grandparents bought him.

“Magglio is a very happy child despite what he’s going through,” he said.

Nannette Boscarino remained optimistic about her grandson’s chances. “Four years ago, there was no treatment, so who knows?”

Parishioners, acquaintances and others turned out to support the family. Sona Ahuja of Albany said she plays on a volleyball team with Nannette and her husband John.

“It’s nice to see the community come together and support our friends,” he said.

The money raised from the event would help defray insurance co-pays and travel expenses to the hospital.

Magglio receives treatments as often as three times a week about 45 miles from where he lives in California.

The family works different hours to care for Magglio. Mark Boscarino is a personal trainer and Becka is member services director for the Jewish Community Center.

“They don’t get to see each other,” Nannette Boscarino said.

Sandie Lippmann of Rotterdam was at a table selling various baked goods — Rice Krispie treats, cakes, pies, cookies and rosettes.

Diane Trzaskos, one of the organizers of the event, said communities in California were holding fundraisers for the infant and she wanted to do something similar here.

“Our goal was $10,000 and I believe it’s going to go over that,” she said.

Those seeking to contribute can send checks payable to The Magglio Fund, at First National Bank of Scotia, 2695 Hamburg St., Schenectady, NY 12303, attn: Kristen Relyea.