A Memoir of a Mother’s Determination and Her Micro Preemie’s Struggle to Beat the Odds
The 2nd Annual Morgan’s FunDay to fight Necrotizing Enterocolitis in premature babies was on Friday June 23rd and it was a huge success!
We were supposed to have the party on the beach but Mother Nature had different plans for us and we moved the party inside. Our guests didn’t seem to mind at all and were all happy to be in the air-conditioned ballroom and not outside in 97% Relative Humidity!
We had such a great day!
Over 50 adults and close to 40 kids came to help support our cause.
Necrotizing Enterocolitis (NEC) is an infection that inflames part of a baby’s intestines. This disease, which can often require surgery to remove damaged sections of intestine, often develops two to three weeks after birth, but can occur later. “Necrotizing” means damage and/or death of cells, “entero” refers to the intestine, and “colitis” means inflammation of the colon (lower part of the intestine). This occurs predominantly in premature infants. The mortality rate of babies who require surgery to treat NEC can be up to 50%.
The Morgan Leary Vaughan Fund is a nonprofit dedicated to raising awareness about Necrotizing Enterocolitis and the money raised goes towards research into treating NEC and preventing future premature babies from losing their lives to this terrible disease. I am a proud member of their Board of Directors. Click HERE to read how Morgan’s Fund was founded and learn of the amazing NEC survival story of Morgan Vaughan and how that inspired his family to start a nonprofit.
I got joined The Morgan Leary Vaughan Fund a few years ago because I know that my daughter is alive today due to the type of research they support. My daughter Joy was born at 23 weeks gestation in 2012 and weighed just 1 lb. 4 oz. (575 grams) and was only 11 3/4 inches long. She spend 121 days in the Neonatal Intensive Care Unit (NICU) at Maria Fareri Children’s Hospital at Westchester Medical Center and is now a happy and healthy 5 year old.
The Mahopac Golf and Beach Club and their excellent staff helped us plan a great event and this allowed our fundraiser to go off without a hitch despite the fact that we had to move inside because of rain.
The highlight of the afternoon was the award presentation. I was honored to present The Lily Pedro Award for Excellence to Dr. Boriana Parvez of Maria Fareri Children’s Hospital at Westchester Medical Center. Dr. Parvez has been practicing neonatology for close to 30 years and she has recently been instrumental in helping establish The New York Milk Bank. She has even been to Albany urging New York State to pass legislation requiring them to pay for donor breast milk for extremely premature babies whose mothers cannot produce enough- and the legislation passed!
Established in 2016, the Lily Pedro Award for Excellence award recognizes individuals or organizations who exemplify the mission, vision, and ideals of The Morgan Leary Vaughan Fund. It is named in memory of Lily Marie Pedro, infant daughter of Katherine and Frank Pedro, who lost her battle with NEC in 2012.
Quite a few NICU staff members from Maria Fareri Children’s Hospital attended our event to support our cause and to congratulate Dr. Parvez. Members of The New York Milk Bank also came to do the same. It was wonderful to have them all there!
(Members of The New York Milk Bank)
I am truly humbled at the number of people who donated their time and services to make our event so special!
When our guests arrived they entered a room adorned with purple and white balloons donated by Billy Perillo of Brian Williams Event Decorators in Jefferson Valley, NY. Each flower centerpiece was hand made and donated by Louise Ladden. Ryan Michael from Turning Point Entertainment donated his time and equipment to provide entertainment and act as our Master of Ceremonies for the afternoon. Zippy the Clown put on a fabulous show for the kids on the patio while the adults ate and listened to a few speeches and he kept them occupied with balloon animals so that we could have our awards presentation. Jennifer Lynn Photography donated her time and expertise to take professional photos for us throughout the event. Aimee Freundich volunteered to be our face painter and she did an excellent job creating all sorts of artwork on the faces, arms and legs of the kids. And I have to thank the 11 students from Mahopac High School who volunteered their time to help me check in our guests and sell raffle tickets. My students and their kind hearts always blow me away.
Putnam and Westchester Counties have some very generous business owners. We had over thirty donated gift certificates to local restaurants and other establishments that we were able to raffle off along with our four silent auction items!
Because of their generosity and willingness to help us save the lives of premature babies- I would like to list names of the businesses that donated with the hopes that you consider visiting them or using them for your future needs.
So- if you’re looking to take your family out to eat in Putnam or Westchester Counties- please consider visiting The Melting Pot, Arturo’s Tavern, Mike and Joes Wood Fired Pizza, Kobu, Cacciatori Pizzeria, Uncle Louie G’s, Café Piccolo, Ramiro’s 954, il Laghetto, The Chophouse Grille, La Familia Felice, Frankie & Auggie’z, La Valetta Pizza and Pasta, Benevento’s, Rick’s Seafood, Char Steakhouse and Bar, or Three Boys from Italy.
I would like to give a shout out to Fraser’s Hardware, The Pied Piper Theater, The Yorktown Stage, The Paramount Theater, The Carmel Cinema, Regal Theaters, Legoland of Westchester, Lake Compounce, ARMY Football at WestPoint, Six Flags New England, The Bronx Zoo, The Beardsley Zoo, The Mystic Aquarium, Dorney Park, A Touch of Beauty, Cozy Nails and Red Mills Market for their donations as well. I also want to thank Terrance Hughes and Billy Ashford from The Pro Shop at The Mahopac Golf and Beach Club for donating a new Titleist golf bag and a 1 hour gold lesson. All of these donations helped us raise the necessary money so that we can support research into Necrotizing Enterocolitis.
The 2nd Annual Morgan’s FunDay was not only a fun afternoon for all who attended, but it raised almost double the amount that we raised last year!
Thank you to everyone who attended, donated money, donated a raffle or auction item, or shared our vent with someone else.
I am blessed to have my premature baby to hug and kiss each night and I’m honored to be a part of The Morgan Leary Vaughan Fund.
All of the money we raised at the event will go to the doctors and scientists who research better ways to treat and ultimately prevent NEC in premature babies.
Please check back to www.micropreemie.net and www.facebook.com/jenniferdegl to see what we are up to next and what we are doing to advocate for and spread awareness about premature babies and their families.
Have a great summer!
The Degl and Vaughan Families
Join me on Friday June 23rd from 4 to 7 pm at Mahopac Golf and Beach Club for some fundraising in the Sun at Morgan’s FunDay!
We are having a BEACH PARTY!
Morgan’s FunDay is sponsored by The Morgan Leary Vaughan Fund and our proceeds go to the doctors and scientists who are researching ways to better treat and prevent Necrotizing Enterocolitis in premature babies.
Necrotizing Enterocolits (NEC) is a devastating disease that can take the lives of up to 50% of the premature babies who develop it. That is unacceptable to us at Morgan’ Fund and we are trying to do everything we can to stop it.
You all know that my daughter Joy was born 17 weeks early in 2012 and we know that she is alive today because of the wonderful care she received a Maria Fareri Children’s Hospital and research like this.
The Morgan Leary Vaughan Fund is named after Morgan- who lost a large portion of his intestines due to developing NEC soon, after his premature birth. Morgan is thriving today because of this research.
So… what are we doing at the beach?
We’ll have lifeguard supervised swimming in beautiful Lake Mahopac, a dinner buffet, desserts, an adult bar, ice cream bar and several fun activities.
Our activities (besides swimming!) include a DJ, games, crafts, face painting, a clown show, balloon animals, and we’ll have raffles galore!!!
Check out some of our raffle items:
Over 30 restaurants from both Putnam and Westchester have donated gift certificates so that we can raffle them off along with many gift baskets.
We also have some amazing auction items- such as 4 Total Experience Bronx Zoo Tickets & 4 Beardsley Zoo tickets, 4 ARMY Football Tickets, a Foursome to Mahopac Golf and Beach Club and more.
And your ticket automatically enters you into the Door Prize raffle for a brand new golf bag- donated by the Pro Shop at Mahopac Golf and Beach Club, and it comes with a 1 Hour Golf Lesson with the Club Pro- Billy Ashford! Plus, each adult gets one FREE DRINK ticket to use at the bar and each child gets a coupon for a FREE MEAL at Chili’s!
I’m honored to present Dr. Boriana Parvez of Maria Fareri Children’s Hospital with this year’s Lily Pedro Award for Excellence for her work in helping to establish the New York Milk Bank. The award is named after Lily Pedro- the sweet little girl who lost her life to NEC.
So pack your bathing suit and grab your sunscreen and get your tickets today by clicking HERE.
You can click HERE to check out some photos of last year’s event:
We’ll see you on June 23rd! Oh, and spread the word! The more people who come- the more money we can raise for research!
Thank you 🙂
I’m so happy to report that the First Annual Morgan’s FunDay, held on Sunday April 24, 2016- was a success!
HERE is the Press Release about it.
Morgan’s FunDay is a special day of fun and fundraising for The Morgan Leary Vaughan Fund (a nonprofit which I am a member of their Board of Directors) that raises money to treat and prevent Necrotizing Enterocolitis (NEC) in premature and medically fragile babies.
I became involved with them after meeting Stephanie Vaughan (President and Co-Founder of the The Morgan Leary Vaughan Fund) at a speaking event I did in Connecticut, after publishing my book (From Hope to Joy) about my miracle 23 week micro preemie- Joy.
The Morgan Leary Vaughan Fund (AKA “Morgan’s Fund”) was started after Stephanie and Jeff Vaughan delivered premature twin boys (Shaymus and Morgan) and Morgan developed Necrotizing Enterocolitis.
The weather was great!
The adults were able to enjoy the beautiful view of the Mahopac Golf Club while sipping their complimentary drink and the children were able to get fresh air- while watching the magic show, getting their face painted and doing some summersaults and back flips on the tumbling mats.
Photos by © Nick Benson Photography, 2016
Our afternoon started out quite leisurely as everyone trickled in. The DJ had the music playing and the kids started dancing right away. I love to see the kids dance!
After a while, we opened the kids buffet so that they could eat before the magic show began.
The kids started to get excited when they saw the magician walking in and then their eyes lit up even more when they saw the tumbling mats go by 🙂
Five of my high school students volunteered to help for day. They sold raffle tickets, 50/50 tickets, helped check people in, manned the kids craft table, and they also helped clean up.
The mini tumbling was a hit! Thank you to Gym on Wheels of the Hudson Valley for donating your time and mats so that the kids could get some exercise and practice their gymnastic skills!
The kids were sporting some pretty cool designs by our face painter, Aimee. I want to thank her for donating her time and talents so that the kids could have their faces, arms (and some legs!) painted.
I also want to thank Jocko the Magician for giving the kids such a great show. They were laughing and yelling with Joy!
The adult buffet opened soon after the magic show began. The timing was great! The kids were watching the magic show on the patio while their parents watched them through the glass.
Once all of the adults were seated, we began the award presentation and speeches.
After introducing myself, sharing Joy’s birth story and explaining why I got involved with The Morgan Leary Vaughan Fund, I introduced Stephanie Vaughan- President and Co-Founder. Stephanie shared how “Morgan’s Fund” got started and how they use the money raised to support research for the treatment and prevention NEC.
While the children (over 30 of them!) watched the magic show or tumbled around, we had the pleasure to listen to our guest speakers- who have been affected by Necrotizing Enterocolitis in ways that are unimaginable to most of us.
First, Katie and Frank Pedro shared their story. Lucas and Lily Pedro (twins) were born as micro preemies in 2012 and both babies developed NEC. Although the doctors did all that they could, Lily earned her angel wings and now watches over her beautiful twin brother (Lucas) and her parents from heaven.
Next, the Falcone family shared their very personal experience with NEC. Tracey and John Falcone also delivered twins as micro preemies. Their baby girl Mia only survived a few days and their son Anthony lived for 8 months- all of which was in the Neonatal Intensive Care Unit (NICU) at Maria Fareri Children’s Hospital in Valhalla, NY. He suffered from several complications due to his extremely premature birth, including Necrotizing Enterocolitis, and now both Mia and Anthony are guardian angels watching over their brother and sister here on earth .
I cannot thank these families enough for speaking at Morgan’s FunDay. It’s not easy to speak about our most painful experiences, especially losing a child (or children). For a few moments, these parents selflessly let us into their lives so that we could see how devastating premature births and Necrotizing Enterocolitis can be to families.
Both families deserve a lot of credit for sharing their most personal experiences.
Once our speakers were finished, we presented The Lily Pedro Award for Excellence to Dr. Edmund LaGamma of Maria Fareri Children’s Hospital at Westchester Medical Center.
Dr. LaGamma has been published in over 100 research articles related to neonatology and several of them are related to the treatment and prevention of Necrotizing Enterocolitis.
The Lily Pedro Award for Excellence was established to recognize individuals or organizations who exemplify the mission, vision, and ideals of The Morgan Leary Vaughan Fund. It is named in memory of Lily Marie Pedro, infant daughter of Katherine and Frank Pedro, who lost her battle with NEC in 2012.
Dr. Edmund LaGamma is a very deserving recipient of this award. His research and dedication to NEC and premature births is well established and ongoing- and he is Chief of Newborn Medicine in the NICU at Maria Fareri Children’s Hospital at Westchester Medical Center. He is also the reason why my daughter is alive after her extremely premature birth at 23 weeks gestation in 2012.
I was honored to present this year’s award to Dr. LaGamma.
Joy will be 4 years old in a few weeks- and this is thanks to Dr. LaGamma and the other neonatologists and nurses at Maria Fareri Children’s Hospital.
The rest of the afternoon is a blur as it was filled with music, dancing, games and raffles!
The local businesses were so generous- donating over 60 gift certificates and goodies to be raffled off.
We also had three silent auction items to bid on and two large Door Prizes to give away ($500 Foursome to Mahopac Golf and Beach Club and 4 Jim Beam Suite Yankee tickets with private parking!) 🙂
We kept the giveaways, music and games going through dessert and the kids (and many adults!) got to enjoy the “make-your-own” ice cream sundae bar. That was a hit!
So… in conclusion…
It was a great day to raise awareness and money to help treat and prevent Necrotizing Enterocolitis in premature babies and we had fun doing it!
That was my goal.
Every child should have the opportunity to enjoy life, get their face painted, do summersaults and watch a magic show with friends.
Today was about raising money so that more premature babies get that opportunity.
Thank you to everyone who came, donated, or just spread the word.
And a special thanks goes to The Pedro Family, Falcone Family, Dr. LaGamma, The Morgan Leary Vaughan Fund and all of the vendors that donated their time and services to Morgan’s FunDay. They are listed below.
The Falcone Family started a nonprofit to assist families with babies in the NICU. It’s called The Wonder Twins Fund. Please visit their site to learn about how you can help, too.
I hope to see you all (and some of your friends. LOL!) next year 🙂
Thanks again to Brian Williams Events for donating the balloon centerpieces, Aimee Freundich for donating her talent and time so that the kids could have their faces painted, Gym on Wheels of the Hudson Valley for donating their time so that the kids could do some gymnastics, Jocko the Magician for the magic show, Nick Benson Photography for the beautiful pictures, Ryan from Turning Point Entertainment for our music, and The Mahopac Golf and Beach Club for the venue.
Below is a list of the GENEROUS local restaurants and businesses that donated gift certificates, money, or products to support Morgan’s FunDay and Necrotizing Enterocolitis research. Please click on them as a “thank you” to see if you can use any of their services 🙂
Please visit The Morgan Leary Vaughan Fund’s website by clicking HERE to learn more about Necrotizing Enterocolitis and how we are using the monies to research new treatments and preventions.
Please sign up for my monthly blogposts so that you can see what’s going on in the world of prematurity and how you can get involved, too 🙂