Dear Friends and Family,
This coming February, we will celebrate Audrey’s fourth birthday! What a journey it has been!
Audrey Rae Troncoso was born at 7:17 pm on February 11, 2014. After two weeks of hospital bed rest, she was delivered five weeks early because of preeclampsia and measuring small for gestational age. She weighed in at just 4 pounds, 15 ounces, not the smallest baby in the Neonatal Intensive Care Unit (NICU) at Tallahassee Memorial Hospital, but certainly the smallest baby we have ever seen!
Over the next 14 days, we spent every minute we could at Audrey’s side as she learned to breath, feed, and maintain his own body temperature in NICU. After a long two weeks, we finally introduced her to the outside world.
Audrey is one of nearly half a million U.S. babies who are born prematurely every year – and face an increased risk of death and disability. Prematurity is the leading cause of death among newborns, taking the life of about 72 babies per day.
However, Audrey’s journey was not finished. Like many babies who are born prematurely, leave the hospital, and begin to meet developmental milestones, Audrey was not. We immediately knew something was amiss and began a battery of testing with pediatric specialists in Tallahassee and Gainesville. After almost one year, Audrey was diagnosed with an extremely rare chromosome disorder known as Tetrasonmy 18p. She is one of 72 diagnosed cases in the US and 250 in the world. To put this number in perspective, there were 3,978,497 live births in the United States in 2015.
Our pediatric geneticist, cried with us as she read the only published article on Tetrasonmy 18p. We could expect intellectual disability and an array of medical conditions, including heart, neurological, hearing loss, gastrointestinal, vision difficulties, and growth. We immediately asked, “could the test be done again?” Our geneticist replied, “I have never seen this condition before. I sent her samples to four different universities for retesting.” We were told that our gorgeous, perfect little Audrey Rae was in for a ton of therapy, intervention and most likely, retardation.
About 1 in 150 babies is born with a chromosomal condition. Down syndrome is an example of a chromosomal condition. We soon came to understand the March of Dimes provides grants to researchers, with the goal of understanding the causes of and treatments for chromosome and genetic disorders.
We began to cry right in her office, grieving all the things we has wished for, and even expected, and kept crying for a solid two weeks. We knew, though, that this pity party wasn’t doing any of us any good, so we jumped into the world of early intervention. Because of her early delays, Audrey has been receiving occupational and physical therapy since four months old and speech therapy since one year.
Today, we are happy to report Audrey is beating all the odds! She has no health conditions and walks, “talks,” and loves life! She loves to swim, climb, read, and watch Disney movies. She attended a private preschool since the age of two and at three transitioned into a special needs VPK-3 class provided by Leon County Public Schools. We have seen tremendous growth in her speech and fine motor skills since beginning this program.
When we first received her diagnosis, I kicked myself, thinking the Benadryl I took for sleeping while I was pregnant caused her situation. But the geneticist set me straight – Audrey is special because she was meant to be special.
It would be easy to continue to have a pity party. We still get sad when we see other little girls doing “normal” things but we know Audrey will do it in her own time and her own way. Wences and I feel special because she was picked for us for a reason. Maybe it was to teach me patience; maybe it was to teach Wences to learn to trust others (especially doctors!). While we still don’t know the reason, we are blessed.
We can relate Audrey’s and others like her to that of a starfish:
A friend of ours was walking down a deserted beach at sunset. As he walked along, he began to see another man in the distance. As he grew nearer, he noticed that the man kept leaning down, picking something up and throwing it out into the water. Time and again he kept hurling things out into the ocean.
As our friend approached even closer, he noticed that the man was picking up starfish that had been washed up on the beach and, one at a time, he was throwing them back into the water.
Our friend was puzzled. He approached the man and said, “Good evening, friend. I was wondering what you are doing.”
“I’m throwing these starfish back into the ocean. You see, it’s low tide right now and all of these starfish have been washed up onto the shore. If I don’t throw them back into the sea, they’ll die up here from lack of oxygen.”
“I understand,” my friend replied, “but there must be thousands of starfish on this beach. You can’t possibly get to all of them. There are simply too many. And don’t you realize this is probably happening on hundreds of beaches all up and down this coast. Can’t you see that you can’t possibly make a difference?”
The man smiled, bent down and picked up yet another starfish, and as he threw it back into the sea, he replied, “Made a difference to that one!
-Jack Canfield and Mark V. Hansen
March of Dimes
For 79 years, the March of Dimes has been working to make babies healthier and stronger. In 2003, the March of Dimes launched a national Prematurity Prevention Campaign to reduce premature births and the risks associated with premature birth. As a result of their efforts and that of their partners, U.S. premature birth rates have fallen for five consecutive years and have held steady the last two years, from 12.8% in 2006 to 9.6% in 2014. The state of Florida is a slightly higher at 9.9%
The March of Dimes also works to improve care and treatment for premature babies like Audrey. Because of the March of Dimes Advocacy, Audrey was screened for more than 29 treatable core conditions after delivery so the doctors could detect and treat potential problems early on. The March of Dimes offers support for families who have babies in the NICU, providing information and comfort to more than 89,000 families at 120 hospitals nationwide. One in our backyard -- UF Health.
The March of Dimes invited us to serve as the Ambassador Family for the 2017 Signature Chefs Auction. We are thrilled to share the story of our Audrey and help other babies like her.
How You Can Help
We hope that you’ll join us in supporting the March of Dimes and their efforts to reduce premature births and provide support for babies who are born prematurely. Please consider making a donation at the upcoming Signature Chefs Auction on November 15, 2017, at the Turnbull Center in Tallahassee.
Your donation to the March of Dimes is 100% tax deductible. Here’s an example of how your contribution will make an impact:
We’ve committed to raise $30,000 to help babies like Audrey. We hope you’ll join us in supporting the March of Dimes. Here’s how:
A contribution of any amount will help us make a difference. Thanks in advance for your consideration and support. Stay tuned for updates on Audrey and our fundraising efforts!
Wences, Katie, Audrey, and Christian Troncoso