BENEFITING: March of Dimes Foundation
EVENT DATE: Nov 15, 2016
Chad and I are honored to served as the Fund the Mission Co-Chairs and Ambassador Family for the March of Dimes Heroines of Washington Gala. It is our goal to raise as much money possible for the March of Dimes during the event's FUND THE MISSION portion of the program.
As the Ambassador Family, our story will be featured during the Fund the Mission portion of the evening with a video testimonial. At this time, there will be an opportunity to make a 100% tax-deductible FUND THE MISSION gift. Your contribution will raise money to help the March of Dimes and their researchers continue to find a cure for prematurity, birth defects and help support local programs.
We hope you will consider making a FUND THE MISSION gift. Any donations committed or received prior to the event at the $1,000 level or higher, will be recognized in the event program as well as acknowledged during the FUND THE MISSION moment at the gala.
If you choose to make a lead fund the mission gift of $1,000 or more, we would like to invite you and a guest to attend the Heroines of Washington Gala on November 15, 2016. If you are interested in corporate sponsorship opportunities, please let us know. Either way, your support is greatly appreciated.
On October 22, 2007, Anthony Joseph Murray was born. Intubated in the delivery room and rushed to the NICU at Children’s National, AJ would soon be diagnosed with Generalized Infantile Myofibromitosis. A benign tumor, this specific, generalized variant, with extreme visceral involvement, has a 99% mortality rate. My husband and I worried our greatest fear was becoming reality: What if there is nothing to do? What if we have to let our son go, when he only just arrived?
During our first family meeting, the NICU explained that due to the gross morbidity and mortality associated with this tumor, we had the option to rescind care. An oncologist also participating in our family meeting reiterated that there was little study and research available for this tumor; however, she offered a plan to battle the tumor with chemotherapy while the NICU managed his daily care. I have repeated her words in my heart every day since for the last eight years, “It will be like taking a canoe into the ocean. I can’t promise you anything, but if you want to get in that boat, I will get in it with you.” At 10 days-old, AJ started chemotherapy.
Just shy of his first birthday, we welcomed AJ home with a trach, a ventilator, g-tube and daily skilled-nursing care. There were many new challenges and realities to adapt to, but being home was also amazing. Joy can be hard won for families caring for medically fragile children with special needs, but when your smiling child beams all the tubes and wires fall away and you are left feeling the love that glues your family together.
Over the years, we learned through unrelenting trial and error how to maintain a mini ICU in our living room, how to finance it through private insurance and Medicaid, how to manage constant PICU admissions, how to maintain a calendar filled with multiple doctor appointments and therapy sessions of every kind: feeding, speech, physical and occupational. Our son, who was given little chance of survival, slowly learned to walk, to talk, to eat and to breathe. As the years past, our fragile son grew stronger and piece by piece his medical technology fell away. When AJ was six years old he was decanulated, and his life, our life, with a trach was no more. AJ named the top three things he wanted now that he did not have a trach: He wanted a dog, he wanted to swim in a pool and he was excited to go to the beach.
Today our family enjoys vacations at the beach, lazy summer days at the pool and we point fingers at who needs to walk our dog next. My husband and I have committed ourselves to reaching out to other NICU families to offer our support and share our experience. My volunteer work with the March of Dimes Family Support Program at Children’s National Medical Center inspired me to switch careers and dedicate my professional life to paying forward the amazing support I received as a NICU mom. I am humbled to serve the NICU parents in my community in my current role as a NICU Family Support Program Coordinator at Inova Children’s Hospital at the Fairfax Medical Campus.
If you want to help other families find their voice and own their NICU story, please consider making a donation to the March of Dimes today. The NICU Family Support Program educates families to advocate for their babies and prepare to be competent and confident at the bedside and at discharge. Together we can help more families breathe and believe.
We spent most of AJ’s first year of life in the NICU. Our sweet baby endured chemotherapy, ventilation, feeding tubes, sedation, daily x-rays, constant scans, heel pricks, methadone, surgeries, infections, blood clots; the list is endless. Somewhere between codes, in the midst of the cacophony of the NICU, we were introduced to the March of Dimes Family Support Program. This program provided a lifeline for us as we tried to adapt our life to the needs of our medically fragile son. We learned new parenting skills. We learned how to advocate for AJ. We learned how to support our older son, Colin, frightened because baby brother still was not home, and Mommy and Daddy were rarely home together. The March of Dimes taught us that we were not alone.