EAST HAMPTON, Conn. (WTNH) — An East Hampton couple is unmasking a very rare genetic disease called TANGO2.
Mike and Kasha Morris finally got a diagnosis for their 16-year-old son, Ryan, eight months ago.
It turned out that Ryan was missing a part of the gene known as TANGO2, which slows development and can lead to many other issues.
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His parents have formed a foundation to connect with others from around the world to further research. They have found 18 other families and are talking to each other.
“It’s a very lengthy process which is part of the problem with TANGO2 is, it’s not an easy diagnosis,” Kasha explained. “But, after 15 years, we finally had one. The geneticist told us that Ryan had this deletion of the TANGO2 gene and she told us the characteristics of it which Mike and I both were a little shocked by. I mean, we were grateful to have a diagnosis but, at the same time, kind of terrified by what we were hearing.”
“We have to be advocates, hoping to identify other children out there who are afflicted, because it’s so rare with this disease because, in order for us to get where we want to be to help Ryan and help others like him,” said Mike. “If there are other families out there that are going through this and instead of having 18 families pushing this forward, we have 100 or 500 or 1,000. That’s our big goal.”
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Ryan has a certain type of TANGO2 which has allowed him to live much better than many others.
Click here to connect with the family as they build their community alongside doctors to try to find a cure.