Emma Nelson is a 7-year-old with a rare blood disease that causes her to be wheelchair-bound and connected to a feeding tube and respirator.
To prepare her for trips to the doctors, three times a week her parents disconnect her from life support and race to get her to their van connected to the vehicle’s battery “before she turns blue” from struggling to breathe, said Emma’s mother, Katherine Nelson.
“And Emma is getting bigger and heavier and the machines weigh a lot,” said Nelson, 36, of Smithtown. “We need a new van very badly.”
The one they have in mind has more room and a lift gate built in, so Emma -- who has a rare genetic infliction known as ATR-X, the most severe case of Alpha Thalassemia -- won’t have to be disconnected from the life-support machines during transport.
Nelson’s sister-in-law, Nicole Fodera, of Hicksville, started an online campaign in 2012 to help raise money for the van. As of Friday, they had raised $11,706 of the $50,000 goal. But they’re hoping a rock concert organized for this Sunday in Patchogue will help them hit the mark.
Frank Lombardo, of East Setauket, has organized “Help Emma Get a Lift” with his friend Mark Klein, a local DJ who is also a Stony Brook Children’s Center volunteer. The benefit will be held at 89 North Music Venue at 89 North Ocean Avenue in Patchogue.
“The community has come together for this little girl in a big way,” said Lombardo, 54, of East Setauket, who helped create the grassroots campaign ‘Long Islanders Helping Long Islanders.’ “We’ve already raised nearly $25,000 between Gofundme and personal checks. We’re certain we’re going to meet our goal. So certain, we’re already talking to dealerships.”
There will be performances by local musicians Randy Jackson of Zebra, George Cintron and The Clapton Chronicles and The Stanton Anderson Band. Doors at 89 North Music Venue open at 1 p.m. The show will run from 2 to 6 p.m. A $20 donation will be taken at the door.
“All this snowballed into this community effort,” Katherine Nelson said. “With a new van, we can put Emma in her stroller with her machines attached and we can wheel her into the van from the lift and that’s it. It’s so overwhelming what the community has already done for us.”
Nelson said she believes everyone has a mission in life and she has figured out Emma’s.
“Emma brings strangers together. People gravitate towards her,” she said. “I’m overwhelmed by the love we’ve received from the community and I just can’t wait till Sunday’s concert. It’s going to be a blast.”