‘He’s a happy little kid’: Walk raises awareness for Stratham 2-year-old with rare genetic condition

BOSTON — The Children’s Tumor Foundation is raising awareness about a group of incurable genetic conditions called neurofibromatosis, or NF.

Neurofibromatosis is a group of genetic conditions that causes tumors to grow on nerves throughout the body.

The Children’s Tumor Foundation held a ‘Shine A Light Walk’ around Jamaica Pond on Saturday and was joined by families dealing with NF.

Carly and Nino Esile travel frequently from Stratham, New Hampshire, to Boston Hospitals for their 2-year-old son, Johan.

Johan was diagnosed with a type of neurofibromatosis known as NF1 when he was four months old.

“He is a curious little kid,” said Johan’s mother, Carly. “He’s in that age where he wants to learn about everything, he loves dinosaurs and cars.”

Although NF1 is a genetic condition, no one in the Esile family has had it before.

NF1 is considered rare, with 1 in 3,000 people being diagnosed.

The family has spent the last year or so navigating the unknown.

“He could develop kind of normally and live a pretty normal life or he could have severe learning challenges or severe physical pain or issues with mobility,” explained Carly.

Currently, Johan is doing well.

His neurofibromas, or non-cancerous tumors, are benign.

“What keeps you staying positive through this journey? What do you focus on?” asked Boston 25’s Alyssa Azzara.

“The now,” said Nino. “I think my approach to this entire diagnosis is that there’s really nothing we can do in the immediate future, and he’s a happy little kid who’s healthy.”

As part of the walk, Johan and his family raised $10,000 for the Children’s Tumor Foundation.

The Director of Research at the Massachusetts General Hospital Neurofibromatosis Center, Vanessa Merker also attended the walk.

“We recently were lucky enough to get two FDA-approved drugs thanks to the Children’s Tumor Foundation,” said Merker. “There’s still a lot of progress to be made.”

This is a developing story. Check back for updates as more information becomes available.

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