Wall Business Helps Light 80-Foot Tree For Teen With Rare Disease

WALL — Manalapan Teen James Raffone was surprised on Wednesday to find his family's 80-foot-high pine tree lit up in green, the color that symbolizes the fatal childhood disease he is fighting.

Known by family and friends as Jamesy, the 12-year-old was diagnosed eight years ago with the rare disease Duchenne muscular dystrophy.

The family wanted this Christmas, in particular, to be special for the teen, as he is losing his ability to walk.

A couple of business owners from Manalapan and Freehold got together to make the tree lighting possible, with the help of a business from Wall Township.

“When the people in your town want to make your sick child smile and be excited about Christmas, it really fills your heart with joy,” said Jamesy's dad, Jim Raffone.

Parents and Jim and Karen and sisters Mariana and Julia took Jamesy outside Wednesday night for him to find the tree lit up with over 500 lights.

“We wanted to finish it before Jamesy got home from school yesterday,” said the owner of BMJ Landscaping in Manalapan Mike Samuel. "And we wanted the family to be able to take him outside at night and have him throw the switch."

Samuel had told Raffone last year that he'd love to light up the tree for Jamesy, but Raffone said that it wasn’t in the budget.

This time, Samuel showed up with Rick Garvey, owner of R. Garvey (contracting) in Freehold and an 86’ lift donated by Dustin Onulak of Sunbelt Rentals in Wall.

“I have a handicapped sister,” Rick Garvey said. “So I can understand what the Raffones are facing. This little boy deserves all the happiness he can get.”

Most kids with Duchenne muscular dystrophy are in wheelchairs by their early teens and breathing on ventilators by their mid-late-teens. They usually die young in their early twenties after suffocating.

"The doctors told us there was no cure…to just take him home and love him until he dies,” said Raffone, who founded JAR Of Hope to give a voice to families facing Duchenne, and to research a cure for these kids.

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