Small But Strong: Mother makes every moment count for son battling rare disease

Small But Strong

WEST WARWICK, R.I. (WPRI) — Eyewitness News met 4-year-old Banner as he was playing “shark bite” with his mother and grandmother in a hospital bed.

Thankfully, that hospital bed was located in the comfort of his own living room.

In June, Banner finally returned to his West Warwick home after being stuck at Boston Children’s Hospital for six months.

“At a point when he was in the hospital I think he felt like that was going to be the rest of his life,” His mother, Lyndsay Sears, tearfully explained. “He felt like that room, and that bed, was the rest of his life, and I’m just excited to show him, there’s more left for you.”

Courtesy of Lyndsay Sears

Lyndsay is making each day she has with Banner count, because they don’t know how many days he has left.

A little over a year ago, Banner started gaining weight at a rapid pace.

Lyndsay said she was baffled. She put him on diets, cleaned out their house and dealt with the judgment of strangers.

Courtesy of Lyndsay Sears

“I’d buy him a couple of munchkins and people would snicker and point,” she said.

It wasn’t until one scary morning when Banner stopped breathing and turned blue that she got an answer to the mystery.

The rapid obesity was the first sign of an incredibly rare syndrome called ROHHAD.

According to the Genetic and Rare Diseases Information Center, ROHHAD is an acronym for rapid-onset obesity (RO) with hypothalamic dysregulation (H), hypoventilation (H) and autonomic dysregulation (AD).

It is a rare, life-threatening syndrome that affects the autonomic nervous system and the endocrine system.

Days and weeks at the hospital quickly turned to months.

Courtesy of Lyndsay Sears

Lyndsay, who had just opened up her own hair salon, couldn’t keep up with the back and forth trips to Boston. She decided in April to close it.

“It was hard and I felt like I lost a dream, but now I realize it was the best thing for my family,” she said.

Christmas came and went, but Lyndsay kept the holiday alive and well in their living room. The tree stayed up and the presents stayed wrapped.

When Banner finally came home, they celebrated Christmas in June.

“He just tore through his presents and he was so excited and smiling and laughing and it was great,” Lyndsay recalled.

She’s savoring every smile and laugh she can get, determined to show Banner that the world still holds so much for him. She wants to enroll him in school, take him to the zoo and go to the aquarium.

She wants to put off nothing for tomorrow – taking full advantage of today.

Courtesy of Lyndsay Sears

“You have this idea in your head of what your life will be like with your kids. You have this dream of when they get their license, and when they get married and go to prom, and sometimes that just gets taken away from you and you don’t have a choice,” she explained. “You can be angry, or you can be hurt, or you can point the finger and blame, or you can just be grateful. I don’t know how many days we have. I know that they’re limited. I know that every day is so important. I’m lucky to have him. I was changed by having him and I’m saved by having him.”

Lyndsay said she’s loving harder and stronger every day for her little boy, who’s the epitome of small but strong.

For updates on how Banner’s doing, visit his Facebook page, “Banner’s World.”

Copyright 2019 Nexstar Broadcasting, Inc. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.

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