NJ Family Dealing With Rare Diagnosis To Be Featured On CBS 'The Doctors'
BARRINGTON, N.J. (CBS) -- A New Jersey family dealing with a rare diagnosis is hoping to get some answers when they appear on CBS "The Doctors" tomorrow.
Young brothers, Dylan and Logan Sexton were delayed in most of the developmental milestones, and at ages 8 and 5 are non-verbal. They were diagnosed with MED13L back in March after more than three years of research and testing at CHOP's genetics department.
MED13L is characterized by Intellectual disability, speech and language impairment and motor developmental delays with muscular hypotonia. It's also on the autism spectrum.
But because the syndrome is so rare not much else is known about the condition, including life expectancy and how much progress the boys will be able to make over their lifetimes.
"We were just super excited to have MED13L mentioned on national TV. We are hoping other families that have been looking for a diagnosis see our story and they don't give up hope," said Sexton.
The family also wants to educate the public on the rare condition and have aspirations to create a foundation one day.
"Hoping those who see our story learn what is associated with MED13L -- for example behavioral issues. It's not that [Dylan and Logan] are bad kids," Sexton explained.
The family has also been dealing with insurance issues and fighting to get the boys costly medical devices, deemed a medical necessity for them several months ago.
In the next few weeks, their youngest child, Maggie will start testing to see if she has MED13L like her big brothers.
The show airs Tuesday at 9 a.m. EST.
Watch the trailer below for a sneak peek.
