Imagine having to depend on a machine to breathe, a machine that has to be disconnected temporarily every time you get in or out of a car. That’s the reality for 7-year-old Emma Nelson of Smithtown, but an upcoming grassroots fundraiser is aiming to change that.
“Help Get Emma A Lift,” an all-star concert event and fundraiser, seeks to raise money to buy Emma a medically-customized van that would allow her to remain attached to her life-sustaining equipment. Proceeds would go towards buying the Nelson family a van customized with a lift, gate and safety features to get her in and out safely and smoothly and to bear the weight of the 100+ pounds of life-support machinery she needs.
Emma is the only female out of the 200 reported cases of Alpha Thalassemia Mental Retardation X Linked (ATR-X), which requires her to travel with life-support equipment at all times. Currently, she must be disconnected from the machines to get to and from medical appointments, forcing her to go without oxygen during the process of getting in and out of the vehicle.
The fundraiser, which culminates with a big rock show on June 22 from 2 p.m. to 6 p.m. in Patchogue, is being led by Long Islanders Helping Long Islanders and is set to feature acts by Long Island’s own Randy Jackson of Zebra, George Cintron & The Clapton Chronicles and the Stanton Anderson Band.
Tickets are $20 at the door and there will be raffles for prizes ranging from signed Twisted Sister memorabilia to local services to fine wines.
The concert will be help at 89 North Music Venue in Patchogue on June 22, from 2 p.m. until 6 p.m. For more information, check out the event’s Facebook page. To donate to the cause, visit the Nelsons’ Go Fund Me account.