A Memoir of a Mother’s Determination and Her Micro Preemie’s Struggle to Beat the Odds
Despite the freezing temperatures in NY at the moment, my heart was warmed today by a former student of mine who sent me a message out of the blue, asking me to visit her as she sold baked goods to raise money for my daughter’s NICU!
Her name is Lauren and she graduated Mahopac High School a few years ago. During her senior year- she approached me to help her with a project she was doing to earn her Girl Scout Gold Award. She wanted to raise money for the scrapbooking program in the Neonatal Intensive Care Unit (NICU) at Maria Fareri Children’s Hospital at Westchester Medical Center. She called her project “Brighter Days for Hospital Stays”.
Lauren knew that my daughter was born seventeen weeks early at 23 weeks gestation in 2012, weighing just 1 pound and 4 ounces. My daughter spent 121 days in the NICU. There is no way to explain to someone what is feels like to not know if your baby will survive and then leave them in the hospital each and every night for several months, because you cannot take them home. The scrapbooking program, sponsored by the Child Life and Arts Therapy Department at Maria Fareri Children’s Hospital, makes life a bit more tolerable by providing this weekly class for parents who have a baby in the NICU. They provide each parent with a scrapbook and every other supply necessary, but photos. Parents get to put together a beautiful scrapbook documenting each milestone their baby meets in the NICU and they get to bring it home, free of charge, when their baby is finally discharged. But the scrapbooking is really a facade, because this weekly gathering is really like a free and necessary therapy session for NICU parents who are struggling to deal with their circumstances and who are looking for someone else who understands. It was of great value to me and I made some lifelong friends during my scrapbooking sessions in the NICU.
Lauren was able to raise enough money to buy them a new cart to hold and transport all of their supplies, along with a smart phone printer and many other papers and stickers for the parents to use.
You can read about Laruen’s project and fundraising by visiting the website she set up for it at: https://brighterdaysforhospitalstays.weebly.com
You can read my article on her accomplishments at: http://micropreemie.net/blog/brighter-days-for-hospital-stays/
She earned her award several years ago, yet today she returned to her hometown to raise some more money!
Lauren baked all day yesterday and set up this beautiful table in front of Red Mills Market– a very popular store in town- just so she could reach as many people as possible. The owners were surprised that she did not cancel due to the cold, but they don’t know her! They were also gracious enough to offer her unlimited hot drinks!
Let me say that the expected high temperature today was 15° F. Although she was actually freezing out there, Lauren was braving the cold to raise the money because she has to return to college in two weeks.
I am so proud of her and the beautiful young woman she has turned into. She will be excellent in whatever field of medicine she decides to pursue.
Great job Lauren! I know the Child Life and Arts Therapy Department will be so happy to hear what you did.
I am always happy to collect scrapbooking supplies and deliver them to Maria Fareri Children’s Hospital because I am there at least once a month for the NICU Parent Mentor Program.
Please contact me if you would like to donate supplies or money to the scrapbooking program.
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
Sunday May 7th was the Go the Distance Walk and Family Fun Day to raise money for Maria Fareri Children’s Hospital. Although it was a bit chilly, we were so happy that it didn’t rain like it did last year!
Maria Fareri Children’s Hospital is a member of the larger Westchester Medical Center. They are a pediatric hospital committed to providing the most advanced care available to more than 20,000 critically ill infants and children each year. It’s the embodied vision of hundreds of parents, medical professionals and community leaders who had a fervent desire to create a “family-centered” children’s hospital where parents are not visitors but partners, and where the unique creative surroundings are an integral part of the healing process. They have that down pat!
What makes Maria Fareri Children’s Hospital so unique?
That’s why we walk and that’s where the donations go!
Team From Hope to Joy had a Superstar Tent and a pretty good turnout. Unfortunately the walk fell on the same day as family Communion, so we had a few less people than normal, but that didn’t stop us!
The walkers were treated to bagels, donuts, granola bars, water, juice and coffee both before and after the walk.
There was a huge bubble truck cranking out bubbles for the kids to run through and pop; two bounce houses, and a tent with games with prizes!
Also, there were a few princesses and Star Wars characters walking around for photo ops.
Many members of Westchester’s Iowa Style Wrestling club showed up to walk with our team and support the hospital. Thanks guys!
Team From Hope to Joy raised over $4500 for the hospital and we hope to continue to support them at the walk each and every year. Visit our team page by clicking HERE.
We were the #5 on the Top Teams list. Check it out HERE:
It just so happens that May 7th was also Parents of Preemies Day- a day started by Graham’s Foundation to show support for the parents who love and nurture the premature babies of the world. You can read more about Parents of Preemie’s Day by clicking HERE.
Click HERE to read about and see some pictures of last year’s walk.
You can still donate for another week or so by clicking on our Team Page.
Thanks for your support and we hope to see you at the 2018 Go the Distance Walk and Family Fun Day.
Today was the 2016 “Go the Distance” Walk and Family Fun Day for Maria Fareri Children’s Hospital.
It was a great day- despite the rain! And we were a “Super Star Team” this year so they gave us a tent. That was key because we all gathered in it to stay dry before and after the walk 🙂
“Team From Hope to Joy” braved the rain and cold to walk to support Maria Fareri Children’s Hospital so that they can save the lives of more children and help them and their parents have a more comfortable hospital stay.
In 2012- Joy was born at 23 weeks at 1 pound an 4 ounces and they saved her life. The care she received during her 4 months at Maria Fareri Children’s Hospital allowed her to grow into the beautiful ALMOST 4-YEAR OLD that she is today.
They also saved the life of my goddaughter last year after she had a terrible bicycle accident.
We will always be in debt to them for what they did for our family and we’ll always walk to support them 🙂
Although it was raining- the kids all had fun. There was still live music, snacks and drinks, and a game tent.
Umbrellas in hand , Team From Hope to Joy was happy to support Maria Fareri Children’s Hospital today and WE RAISED OVER $4600.00 for them!
And after the walk was over- we went out for lunch.
You can still donate to Maria Fareri Children’s Hospital under “Team From Hope to Joy” for another day or two by visiting our team page:
We hope to see you at next year’s “Go the Distance” Walk and Family Fun Day.
Oh, and please sign up for our email list so that you can stay up to date on Joy’s progress and the fundraising we do to support various prematurity related organizations 🙂
Let’s raise some money for premature babies!
I’m writing to tell you that we have TWO exciting fundraising events coming up this Spring and we hope that you can come out and support them both!
Sunday, April 24th is Morgan’s FunDay!
It’s from 2:00 to 6:00 pm at the Mahopac Golf Club.
The money raised goes to The Morgan Leary Vaughan Fund– a nonprofit for which I am a member of their Board of Directors. “Morgan’s Fund” (for short) collects money which will be used to research Necrotizing Enterocolitis (NEC), a disease that kills too many premature babies each year. The Morgan Leary Vaughan Fund was started by the Vaughan family after one of their twin premature boys developed and survived NEC shortly after birth, requiring over 8 inches of his intestines to be removed. Click HERE to see visit their website.
NEC is a devastating disease that affects the intestine of premature infants. The wall of the intestine is invaded by bacteria, which cause local infection and inflammation that can ultimately destroy the wall of the bowel (intestine). Such bowel wall destruction can lead to perforation of the intestine and spillage of stool into the infant’s abdomen, which can result in an overwhelming infection and death.
Doctors apply for grants from Morgan’s Fund and use the money help find better treatments for NEC with the goal of ultimately being able to prevent it.
We were fortunate that Joy did not develop NEC during her time in the Neonatal Intensive Care Unit (NICU), but not all premature babies are so fortunate. We made a few lifelong friends during Joy’s four months in the NICU and one of these families lost their baby girl to NEC. Her name was Lily.
Because of Lily’s passing, we have dedicated an award in her name- to be given out each year- to a doctor who has done research in the area of Necrotizing Enterocolitis. This year, the Lily Pedro Award for Excellence will be given to Dr. Edmund LaGamma of Maria Fareri Children’s Hospital at Westchester Medical Center. The Pedro Family will be present to share their story.
We can promise an afternoon of fun! There will be a magician, kids craft table, DJ, buffet dinner, adult bar, ice cream bar and a photographer taking complimentary family photos!
Let’s not forget that we have over 50 gift certificates to raffle off! The local businesses and restaurants have been SUPER generous in donating gift certificates and products for our raffle. We also have some great Door Prizes. The Mahopac Golf Club donated a foursome ($500) as a door prize and we plan on having a few more. Your admission ticket automatically enters you into the Door Prize raffle.
Please click HERE to purchase your tickets today! Unfortunately, we cannot accommodate walk-ins and I will have to let the Golf Club know how many people to set up for.
Please share Morgan’s FunDay with your friends and purchase your tickets today!
Sunday, May 1 is the “Go the Distance” Walk and Family Fun Day for Maria Fareri Children’s Hospital in Valhalla, NY.
This is the hospital that saved Joy’s life and where she lived for the first four months after her birth. We owe them EVERYTHING- so we do what we can to raise money for them- when we can.
It’s a great morning for the whole family! Registration begins at 8:30 am and the walk starts a little after 9 am. It’s a SHORT, 1 MILE, FLAT walk that circles around the hospital campus. There will be food, drinks, games, bouncy houses, vendors, children’s characters, and a dance party. The whole event is over by 11:30 am and the rest of the day is yours!
Please consider registering to be on “Team Hope to Joy” by clicking HERE. We would love to have a large group walking with us. We will even give you a “Team From Hope to Joy” shirt!
If you cannot walk with us that day- please consider making a donation to the hospital in the name of our team. Click HERE to do that.
Last year we were able to raise over $11,000 for Maria Fareri Children’s Hospital and we would love to beat that number this year.
Spring is a busy time for everyone. We know that! There are Communions, Confirmations, holidays, birthdays, sports and more…
But, please consider joining us for one or both of our events. If feels good to donate! Plus, you will get a receipt for next year’s tax return!
Let’s help allow more babies to have the best start in life!
Thank you and we hope to see you this Spring!
One more time…
HERE is the link to purchase tickets for Morgan’s FunDay or donate to The Morgan Leary Vaughan Fund.
HERE is the link to register to walk with us at the “Go the Distance” Walk and Family Fun Day” for Maria Fareri Children’s Hospital or just make a donation on behalf of “Team From Hope to Joy” 🙂