Organization works to combat obscure disease
NAUGATUCK — Four years after a little-known disease impacted their lives, a family has come together to help the most vulnerable.
The Morgan Leary Vaughan Fund, Inc. was started to raise awareness about necrotizing enterocolitis, a medical condition that causes portions of the intestines to undergo necrosis, or tissue death. Necrotizing enterocolitis most often occurs in premature infants.
Morgan’s Fund, as the nonprofit is referred to, was started by Naugatuck native and current Stratford resident Stephanie Vaughan and her mother, Naugatuck resident Mary Midolo, in February.
It came about after Vaughan gave birth to two premature twin boys, Morgan and Shaymus, on Oct. 29, 2010. Both boys were approximately three months premature.
Morgan was diagnosed with necrotizing enterocolitis four days later and underwent surgery at Yale-New Haven Hospital. He spent 109 days in the hospital after the surgery.
Midolo said her daughter immediately began researching the disease, but quickly realized there was not a lot known about it.
“When she couldn’t find out much about this she thought starting a nonprofit was the only way people would be able to put an end to the tiny babies having this terrible disease,” Midolo said.
Dr. Adam Matson, a neonatologist with Connecticut Children’s Medical Center and member of the organization’s scientific advisory board, said despite the research that has been done on the disease its cause remains unknown.
Matson said there has not been any one bacteria that is present in all infants suffering from the disease.
“Why some babies will get necrotizing enterocolitis where others will not is not completely understood at this time,” Matson said. “Compared to other problems, such as respiratory difficulties, it’s more difficult to navigate which babies may end up suffering from necrotizing enterocolitis.”
With little known on the disease, Vaughan and Midolo set their minds to raising awareness of necrotizing enterocolitis and funds for research.
“One of the greatest challenges that I see with necrotizing enterocolitis is awareness,” Vaughan said in an email. “When Morgan was diagnosed, we had never heard of NEC, and no one that we spoke to outside of the [neonatal intensive-care unit] had ever heard of NEC. Recently, one of Morgan’s former nurses commented that until you, as a parent, are faced with NEC, you don’t know about it. That is where we need to affect a change.”
At the end of June, after nearly a year of waiting, Morgan’s Fund received its official nonprofit status and can start receiving donations.
“We didn’t want to move forward asking people to support us until we received the final word,” Midolo said.
Matson said organizations like Morgan’s Fund are beneficial to doctors researching the disease.
“I think these types of organizations are important to raise money that can help to support the research for necrotizing enterocolitis so the medical community can make progress in terms of treating, diagnosing, and ultimately finding a cure to this problem,” Matson said.
Midolo said the organization is currently in the process of building its advisory board. Vaughan serves as president and Midolo as the board’s secretary.
The organization is also building a scientific advisory board to help facilitate the research. The board, which includes Matson, is made up of eight doctors from around the nation.
“We wanted to have all of our ducks in row. We want this to be able to stand without us. It won’t be a short-term situation. This disease will take time and research to eliminate,” Midolo said.
Midolo said the family realizes how lucky they are that Morgan survived and wants to help other families that find themselves in the same situation.
Necrotizing enterocolitis is the second leading cause of death among premature infants and has a mortality rate of approximately 40 percent, according to Midolo.
“Depending on the amount of intestine involved and how severe it is, the long-term outcomes can be a problem. In some cases it can be treated with antibiotics. Other times it requires surgery,” Midolo said. “We have been very lucky because Morgan has very little aftereffects. We feel very fortunate so we want to do something for others so they can have an outcome as good as we’ve experienced.”
For more information on Morgan’s Fund or to donate, visit www.morgansfund.org.
As for Morgan, Midolo said he is doing very well.
“He is a happy, healthy 3-and-a-half-year-old,” Midolo said. “He was a little slower in developing than his [twin] brother because of his time in the hospital, but if you met him now you wouldn’t be able to tell which one it was.”