BOSTON \u2014 The Children\u2019s Tumor Foundation is raising awareness about a group of incurable genetic conditions called neurofibromatosis, or NF. <\/p>\n
Neurofibromatosis is a group of genetic conditions that causes tumors to grow on nerves throughout the body.<\/p>\n
The Children\u2019s Tumor Foundation held a \u2018Shine A Light Walk\u2019 around Jamaica Pond on Saturday and was joined by families dealing with NF. <\/p>\n
Carly and Nino Esile travel frequently from Stratham, New Hampshire, to Boston Hospitals for their 2-year-old son, Johan.<\/p>\n
Johan was diagnosed with a type of neurofibromatosis known as NF1 when he was four months old. <\/p>\n
\u201cHe is a curious little kid,\u201d said Johan\u2019s mother, Carly. \u201cHe\u2019s in that age where he wants to learn about everything, he loves dinosaurs and cars.\u201d<\/p>\n
Although NF1 is a genetic condition, no one in the Esile family has had it before.<\/p>\n
NF1 is considered rare, with 1 in 3,000 people being diagnosed.<\/p>\n
The family has spent the last year or so navigating the unknown. <\/p>\n
\u201cHe 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,\u201d explained Carly.<\/p>\n
Currently, Johan is doing well. <\/p>\n
His neurofibromas, or non-cancerous tumors, are benign. <\/p>\n
\u201cWhat keeps you staying positive through this journey? What do you focus on?\u201d asked Boston 25\u2019s Alyssa Azzara.<\/p>\n
\u201cThe now,\u201d said Nino. \u201cI think my approach to this entire diagnosis is that there\u2019s really nothing we can do in the immediate future, and he\u2019s a happy little kid who\u2019s healthy.\u201d<\/p>\n
As part of the walk, Johan and his family raised $10,000 for the Children\u2019s Tumor Foundation.<\/p>\n
The Director of Research at the Massachusetts General Hospital Neurofibromatosis Center, Vanessa Merker also attended the walk. <\/p>\n
\u201cWe recently were lucky enough to get two FDA-approved drugs thanks to the Children\u2019s Tumor Foundation,\u201d said Merker. \u201cThere\u2019s still a lot of progress to be made.\u201d<\/p>\n
This is a developing story. Check back for updates as more information becomes available. <\/p>\n
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