Little boy's weight doubles from rare syndrome

The mother of a little boy who has gained almost three stone (15kg) 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 five stone (31kg) - almost twice the weight of the average four-year-old.

Banner's mother Lyndsay Sears, 39, said she was shocked by the behaviour 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, from Rhode Island, in the US, 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.

Banner is such an amazing little boy and I want him to have the best life possible.

"He's just a little kid and he doesn't understand, which is lucky, but people are just unbelievably cruel."

Mum-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 with the condition in the world. Those that are diagnosed with the illness die in their teens and early twenties. Banner's symptoms began in February 2018, when he gained 4kg in six weeks after suffering from influenza A.

The little boy continued to gain weight and experience problems with his breathing, which mum Lyndsay said an endocrinologist originally put down to a poor lifestyle.

Lyndsay made the difficult decision to sell her newly-opened hair salon earlier this year to care for Banner, which she said crushed her.

But the mum 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.

"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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