Riverhead boy with lymphedema earns ‘Youth Ambassador’ award
Nicholas Hernandez, a five-year-old boy from Riverhead, is trying to raise awareness for lymphatic disease, a common and incurable swelling ailment that is often overlooked despite affecting an estimated 10 million people nationwide.
In March, Nicholas — who suffers from genetic lymphedema — and his family along with the Lymphatic Education & Research Network (LERN) helped convince the New York State Legislature to recognize Lymphedema Day as a way to raise awareness. On Saturday, the Hernandez family will once again take part in a walk across the Brooklyn Bridge for the cause, which has become a family tradition.
But for this year’s walk, Nicholas will have a new title: Youth Ambassador.
The award will be presented by New York State Senator Martin Golden and New York State Assemblywoman Linda Rosenthal, according to LERN.
“We are beginning to see these diseases come out of the shadows and get the attention they deserve,” William Repicci, LERN’s executive director, said in a statement.
Lymphedema — the most common form of lymphatic disease — occurs when there’s a breakdown in the body’s lymph system. The lymph system helps to shuttle around fluid that’s leaked out of the blood, but when something goes wrong, that fluid can back up and cause swelling and other symptoms.
The kind of lymphedema Nicholas has — which is genetic — is rare.
Nicholas’ mother, Christina, said her son was on a special diet. While he grew out of the worst symptoms of the disease, he still needs to wear a “compression garment” — a type of tight clothing that prevents his leg from swelling further. That treatment is among the only solutions for lymphedema and isn’t covered by most insurance plans.
Nicholas has had the disease since he was born and the Hernandez family has worked to urge researchers and lawmakers to devote more resources to curing the disease.
Visit LymphWalk.org to register for the walk, join/form a team or become a “virtual walker.”
Registration is $20 and each registered team member will receive a T-shirt and medal at the end of the event.
Nicholas and his sister, Lexi, will also be selling bracelets to raise money.