12-year-old battling rare disorder got the surprise of a lifetime from his favorite airline
LONG ISLAND (WABC) -- A 12-year-old boy from Long Island with a rare genetic disorder got a heartwarming surprise.
Ali Sherazi is one of about 1 in 100 people worldwide who have been diagnosed with a rare genetic disorder with no cure.
When his favorite airline got word of his story, they gave him the surprise of a lifetime.
Sherazi is nonverbal and was diagnosed with a rare genetic disorder, NGLY1 deficiency, which is so rare, only 15 children in the U.S. have it.
About six months ago, things took a turn for the worse.
"Ali had a rapid decline. He has lost his mobility and now he's wheelchair bound and in May, he was put on pediatric hospice. Unfortunately, there is no cure for this," Sherazi's mother, Noorulain, said.
But Ali has one passion that lifts his spirits: JetBlue planes.
"He doesn't ask for much. You know, he's not like other kids where they're like, we want toys. The only thing he asks is for me to come out here and drive him to the JetBlue," his mother said.
For nine years, Ali's mother has driven him to JFK Airport several times a week just to plane-watch.
His obsession with JetBlue began at age three and never faded. Using a communication device, he types "JetBlue" to ask for visits.
"The excitement in his eyes says it all every time we drive by. Even though his body can't do so much, but I see you know his soul like soar when he takes a look at these planes," his mother said.
Hoping for a simple message from the airline, she wrote to JetBlue. But what she got was far more. JetBlue invited them for a full tour of the hangar, a meet-and-greet with a pilot, and a chance for Ali to sit in the cockpit.
"Today, just perfect. It's a dream come true. I could live in this moment for us, my life, and I think it'll be great gift for Sakina, because every time I think about what's tomorrow going to look like, it gets harder. So I think this is, this is a day where I know that my Holly was happy and he got to be here," his mother said.
JetBlue pilot Brian Anderson was part of the surprise.
"Caring is one of our values here at JetBlue, and it was something that the team saw, and we felt that we needed to jump on it," Anderson said.
And for Anderson, who is a father himself, the moment was unforgettable.
"You could see it in his eyes. You could in the cockpit, just he was taking it in. You can truly see he was taking it in. And so that just really, really warmed my heart. It lets me see what I do day in day out, through a new set of eyes. And to really reignite that magic of doing this, I've been flying for JetBlue for 20 years, and it never gets old, taking control of one of these aircraft and going up in the sky, but seeing it over like that just puts a new facet to it, and it's it was really special," Anderson said.
Ali's story is a reminder of the power of compassion and how even a plane can lift a spirit higher than the clouds.
"We don't know how much time we have with him so and as you saw, the smile on his face is priceless. It was worth it," Ali's mother said.
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