This Toddler Is The Only Person In The World With This Undiagnosed Genetic Disease And Now That He Has Learned How To Walk His Family Is Hoping To Raise Enough Money To Fence In Their Yard To Keep Him Safe

Westford, Massachusetts. Weston is an adorable 3-month-old little boy who currently is the only person in the world with a specific genetic disease that has yet to be diagnosed.
“He is being researched by the National Institute of Health Undiagnosed Diseases Network at the Harvard site,” Tory Nersasian, Weston’s aunt, wrote on a GoFundMe page.
“He has an undiagnosed genetic disease that has not been discovered yet. He is the only one in the world with this undiagnosed genetic disease.”
“He also has a rare eye disease. He has brain abnormalities, epilepsy, weakness to his left side of his body, hypothyroidism, a rare eye condition where his 4th nerve is paralyzed, an inner ear malformation, a nose malformation, and he has Cortical visual impairment, so he is legally blind.”
“He is having his 3rd eye surgery in March, at only 3 years old. He is non-verbal, and he is globally developmentally delayed. Weston is in Pediatric Palliative Care, Department of Developmental Services, DPH Care Coordination, and Massachusetts Commission for the Blind.”
Weston usually goes to over 300 doctor appointments every year, but since the pandemic hit, these appointments all became virtual as opposed to in-person.
Weston’s parents Pat and Ali think that Weston’s increased time at home led to him miraculously learning how to walk, which is something he never was capable of.
Now that Weston has mastered walking, he’s now an avid runner, who frequently makes his way to the street.
GoFundMe; pictured above is Weston
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“We are all beyond thrilled and happy that he has developed this skill, and so is Weston,” Tory said.
“It’s given all of us such great joy. Unfortunately, Weston and his parents live on a rather busy street, and with Weston being legally blind, cognitively impaired, and now running, and running towards the street, his care team is concerned about his safety, and Ali and Pat have been looking into funding to gate off their driveway and fence in part of their yard, to keep him safe.”
Ali and Pat never thought that they would have to lay out the money to get their yard fenced in, and it’s proving to be quite an expensive task.
In the pandemic, the cost of building (and fencing) materials has increased, and on top of that, Ali and Pat need to purchase a motorized gate for the driveway, which also is adding greatly to the total cost of the fence.
“He is never alone outside, or inside for that matter, but sometimes in a split second, he just runs away,” Tory continued.
“Ali and Pat have reached out to their insurance company to determine if gates and fencing would be partially covered due to Weston’s medical conditions, but this type of home modification is not covered.”
“Weston had an evaluation done by Regional Evaluation and Assessment for Community Habilitation (REACH), and they recommended a fence and driveway gate as well, and to try and find funding for it.”
Tory is now hoping to raise enough money to help cover the costs of fencing in Weston’s yard, which she estimates will be around $15,000.
If you would like to donate to help get Weston’s yard fenced in to keep him safe, you can do that here.
More About:Human Interest