Letter from Founders, 2014

February 1, 2014

We are happy to introduce The Morgan Leary Vaughan Fund, Inc. — a public charity dedicated to Necrotizing Enterocolitis (NEC).

On October 29, 2010, our twin sons were born at 28 weeks, one day gestation — nearly three months early — each weighing less than 2.5 pounds.

At four days old, Morgan was diagnosed with NEC (pronounced “neck”) and underwent emergency surgery at Yale-New Haven Children’s Hospital to resect (remove) nearly eight inches of his small intestine. For his age and size, that was equal to approximately 20% of his small intestine.

At the time of his surgery, we had never even heard of NEC nor did we know anything about its startling statistics.

According to the American Pediatric Surgical Association:

  • Necrotizing Enterocolitis (NEC) occurs in approximately 25,000 babies per year.
  • Infants with the most serious form have a 1 in 4 chance of dying.
  • For very low birth weight babies like Morgan, who weigh less than about 3 pounds, the chance of developing NEC is approximately 1 in 18 and accounts for 1/7th of all deaths occurring after one week of life.
  • Despite extensive study, the cause of NEC is uncertain.

According to Eunice Kennedy Shriver National Institute of Child Health and Human Development:

  • NEC is the most common, serious gastrointestinal disease affecting newborn infants.
  • All newborn infants born preterm or born with a low birth weight (less than 5.5 pounds) are at increased risk for NEC. The smaller the infant or the more premature the delivery, the greater the risk.

Morgan would spend 105 days in Yale’s Newborn Special Care Unit recovering from his initial surgery, and then a second surgery in which his small intestine was reconnected.

Immediately after Morgan’s diagnosis, we began to research NEC and its causes and outcomes. We had questions not only about his recovery, but also about what his future would hold after he came home.

We quickly learned that, for as common as this dangerous and often fatal disease is in premature babies, there is very little information about NEC available online. And there is no national organization dedicated to NEC.

We also learned that the March of Dimes does not allow donations to be earmarked for research of a specific disease.

So, we decided to create The Morgan Leary Vaughan Fund, Inc. — a public charity dedicated to Necrotizing Enterocolitis (NEC). Named after Morgan, it celebrates his survival, courage and strength.

We noticed that most of the time organizations are formed due to loss of a family member. The Morgan Leary Vaughan Fund, Inc. was founded because we know how lucky we are that Morgan not only survived but has also thrived since his bout with NEC. This is our way of paying it forward.

The mission of Morgan Leary Vaughan Fund, Inc. is as simple as it is complex: finding a cure for NEC.

The Morgan Leary Vaughan Fund, Inc.’s strategies are straightforward:

  • To create awareness about NEC and the potentially devastating effects it can have on newborns and their families. No one that we’ve spoken to outside of the NICU has ever heard of this disease.
  • To raise money through donations, with which we can directly finance NEC research and its diagnosis, treatment, and ultimately, its cure.

It is hard to ask others for financial support but we are asking for your help to fund research into a devastating disease that has directly affected our family, and so many others.

Thank you for your generosity.

Sincerely,
Stephanie & Jeff Vaughan
Mommy and Daddy of a NEC Survivor

The Vaughan Family
Our family (l to r): Jeff, Shaymus, Morgan and Stephanie
Photo: Photography by Jennifer Lynn, LLC

Credits

Thank you to Carey Jones for creating our logo, and to Paul La Valle for sharing his web development skills.