The mother of a little boy who has gained 41lbs due to a rare, life-limiting condition is astonished by the cruelty of those who comment on his weight -- particularly ADULTS.
Banner Sears, aged four, was diagnosed with ROHHAD in June 2018, four months after he gained weight at an alarming pace and experienced respiratory problems. The syndrome, which impacts the autonomic nervous system, means that little Banner weighs 70lbs - almost twice the weight of the average four-year-old.
Banner's mother Lyndsay Sears, 39, said she was shocked by the behavior of adults when her little boy began to gain weight uncontrollably after falling ill with the flu.
Lyndsay and her fiance Brian Blanchett, 32, an IT specialist, say the cruel comments add to the grief that comes with accepting their child's life-limiting condition.
Lyndsay, a hairstylist, of West Warwick, Rhode Island, USA, said: "People can be so cruel.
When we were trick or treating last October one of the houses refused to give him candy.
"It was mind blowing to me that anyone could treat a child like that.
"In 2019 when there are so many invisible diseases it shocked me that an adult could behave like that.
"Once we were at a fair and he was eating a piece of a doughnut and a woman started pointing at him and doing a blow up face.
It took all my will not to react.
"He's just a little kid and he doesn't understand, which is lucky, but people are just unbelievably cruel." Mom-of-two Lyndsay said her family has struggled to come to terms with Banner's condition, ROHHAD, which stands for Rapid Onset Obesity (RO) with Hypothalamic Dysregulation (H), Hypoventilation (H) and Autonomic Dysregulation (AD).
According to the ROHHAD Association, there are just 100 children condition in the world and those diagnosed with the illness die in their teens and early twenties.
Banner's symptoms began in February 2018, when he gained 9lbs in six weeks after suffering from influenza A.
The little boy continued to gain weight and experience problems with his breathing, which mom Lyndsay said an endocrinologist originally put down to a poor diet.
Lyndsay said: "The week before his third birthday, he got influenza A.
"He was 29lbs at that point and a completely average weight.
"This was when the rapid weight gain started.
It was almost as if he gained six pounds overnight.
His clothing was suddenly tight.
"I became panicked.
I threw out all the junk food and looked forward to an appointment with an endocrinologist at the end of April.
"It was so frustrating when she told me that his weight gain was due to his diet at home because I knew it wasn't the case.
"I knew this change in Banner wasn't down to Wendy's once a week and an hour watching TV at night.
"But I placed my trust in her because she was a doctor and I made efforts to clean up our lifestyle.
"It didn't change anything.
He was 29lbs in February and in a month he was 38lbs.
"I began to notice that when he was sleeping, he would skip a breath every three breaths.
"We had an appointment with our hematologist in June and when she saw us in the waiting room her face dropped.
"She was shocked and worried about Banner's weight gain.
"She immediately recommended we go to another endocrinologist and rushed us to the top of the list.
"After many tests he was eventually diagnosed with ROHHAD, which is a diagnosis that comes when most other things are ruled out." The condition, which Banner's medical team at Boston Children's Hospital are treating as an autoimmune disorder, rapidly progresses each time his immune system is compromised.
The four-year-old fell gravely ill in September 2018 when a viral infection prompted a six-month stint in hospital.
The condition also causes the growth of tumors, and Banner was forced to undergo surgery to address one which was compromising his immune system last December.
Banner's parents made the difficult decision to have their son fitted with a permanent trach tube after the operation, when his body began to struggle to oxygenate his blood.
The little boy even underwent an experimental low-dose chemotherapy treatment to help delay the onset of his ROHHAD which caused him to lose his hair.
Lyndsay said: "Last September, I heard Banner wake up and thought he was having a bad dream.
I wasn't going to get up but then until I heard him wheezing.
"When I went into his room he was blue and unresponsive.
He was rushed to the ER by an ambulance.
"He started seizing and hyperventilating.
He stopped breathing.
"With his condition, he can't regulate his heartbeat or his breathing like a normal person.
"Even something like a common cold can be very dangerous for Banner and it progresses his condition." "In December, he had a trach tube fitted, which has helped ensure he is getting enough oxygen.
"It was a decision we had to make after a surgery he had to address a tumor.
He could no longer breathe effectively on his own after it and we needed him to be properly ventilated." Lyndsay and Brian, who are also parents to Blaise, two, say their family take each day as it comes and try to make the most out of life for Banner.
The mom said she is so excited for her little boy to begin preschool on September 17, which she hopes will reinvigorate him.
"He's super strong.
He's really determined and stubborn like his mom," said Lyndsay.
"He takes after me for sure.
He's really chatty.
"Before that stint in hospital, he was walking and running.
He was a really active child.
"Now he's lost the will to be physical a little bit because he's been stuck in a bed and he hasn't walked since.
"He is starting school on Tuesday and I am so excited for him to have structure and I hope it will give him a boost.
I think it will be wonderful for him.
"He hasn't walked for a long time and needs help getting around in his adaptive medical stroller.
"I fought for his nurses to be able to go with him and thankfully they will be there so I don't have any worries about it.
"It's a devastating card for any family to be dealt but we try to take every day as it comes for our family." Hairstylist Lyndsay made the difficult decision to sell her newly-opened hair salon earlier this year, which she said crushed her.
But the mom says being there for fun-loving Banner made the decision a no-brainer.
"I closed my dream salon after a year because I couldn't keep up with everything.
"Now I care for Banner and my two-year-old all week and work Saturdays.
"It crushed me to close it but I had to relieve stress in some way.
"Banner is such an amazing little boy and I want him to have the best life possible.
"Luckily he can still talk to us even with the trach tube.
He loves to sing and goes crazy for the song Gangnam Style.
"I want him to gain some independence back and hopefully school will be the best thing for him."
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