Will King Hughes only lived 96 days here on Earth. In that time he sparked a movement of family and friends with a desire to make a difference. In honor of Will, The Will King Foundation was created in 2018. The foundation supports international children who are receiving heart treatment at Wolfson Children’s Hospital in Jacksonville, Florida. The goal is to create a community of love, care and support. This community surrounds the children and families they serve during their greatest time of need. Because even the smallest heart can make a big impact.
Even When It’s Hard
Being a parent is hard. One of the hardest parts for me is all the worrying. I didn’t worry about much before I became a mom. I actually lived a pretty care-free, blissful existence until a pale pink line showed up on that surprisingly emotional white stick. From that moment forward I became a person that worried about stuff. I became a person who laid awake at night, thinking about all the possible things that could go wrong for my child. I became a person who read about something awful in the news, like a car accident or a really young person dying from cancer or a school shooting and worried that the same thing would happen to my child.
If you are a mom I’m sure you can relate. I’m sure if you were put on the spot you could name at least a dozen things you are worried about for each of your children. Are you listing them in your head right now? I am too. But here’s the thing – even with all my worst case, irrational, how do I get my kids out of their carseats if I crash off the Buckman thinking, I never, not even in my most dramatic scenarios, thought it would actually happen to me. But it did.
Experiencing the Worst of the Worst
My child died. Isn’t that any parents’ worst of the worst? The absolutely horrifying, I can’t think about it for more than one second nightmares? I never thought I would be a bereaved mother, ever. Definitely not before the age of 30. Our son, Will, was born on December 1, 2017. He is a twin, and he and Caroline are our third and fourth children. Both babies were born healthy but, unknown to us, were infected with a common virus, enterovirus, when they were only a few days old. We rushed them to the ER at Wolfson Children’s Hospital downtown when they were six days old after a routine check up. Our pediatrician was worried about their jaundice and low milk intake. I was, of course, hysterical as my husband drove seven minutes from the pediatrician’s office to the front door of the ER.
I don’t think anyone could have predicted what would happen over the next 90 days. The twins were admitted into the Pediatric ICU. Within 24 hours they had dozens of tests and were hooked up to all types of monitors and medications. They tried to die. A lot. Whether it was from sepsis or incredibly low blood pressure or a truly horrific pulmonary hemorrhage, they made me believe that all of the things I worried about as a mother could, in fact, happen. Our little girl recovered in the most miraculous way and came home on January 1 2018.
Losing Will
Will passed away on March 6, 2018 after 96 days on Earth due to heart failure caused by this virus. Three years later it’s still shocking to write. We learned a lot while our babies were in the hospital. Things like, that EF stands for “ejection fraction” and that’s an important number when it comes to your child’s heart function. We learned that the Chick-fil-a in the hospital does not take gift cards and that if you are there long enough, which I hope you never are, the hospital staff becomes your family. However there are two very important lessons we learned that stand out above all the rest. One, God is good no matter what and, two, we are incredibly blessed.
Counting our Blessings
You might be questioning my sanity right now because what mother who lost her child would call herself blessed? Let me explain. When our babies got sick we had somewhere to go. They had access to exceptional doctors, nurses, specialists, therapists, medications, ventilators, surgeries and anything else they needed for a chance at recovery. If Caroline didn’t have access to Wolfson Children’s she would not be with us today.
If your child is sick or in a car accident or breaks an arm or has a congenital disease or needs surgery or needs medical care of any kind, you’d go to Wolfson Children’s just like we did. I hope no one ever has to bring their child there, but it’s here for all those worst case scenarios we lie awake thinking about at night and that is a blessing. There are children and families all over the world who don’t have access to healthcare like we do. It’s a big problem and we decided to help fix it, in honor of Will.
Finding a Way to Honor Will
A few weeks after Will passed away I called his cardiologist. Dr. Jose Ettegui works at Wolfson Children’s Hospital and took care of our babies. Almost every time he left the room a nurse would say something like, “have you heard about his organization? He brings children from developing countries here for heart treatment.” That always stuck with me, which is why I knew he could help us. I told him we wanted to do something to honor Will’s life and the only thing I could think of that felt remotely right was to help another child receive the same type of care Will received.
He told me there was a little girl, around Will’s age, from Grenada named Avery who needed to come to Jacksonville for heart treatment. If we could raise the funds we could sponsor her in Will’s honor. I immediately said yes, not knowing the path that would unfold. We had a lot of support and raised the money quickly. After spending time with Avery and her mom and hearing their story I knew that we couldn’t stop. There are children all over the world who are born with a congenital heart defect (CHD) and don’t have access to the care they need.
The Will King Foundation
We decided to start a non-profit, called The Will King Foundation, and made it our mission to support international children receiving heart treatment in our city. Since 2018 we have worked with Patrons of the Hearts, the organization started by Dr. Ettedgui and his wife in 2005, to sponsor six children from developing countries for heart treatment. We are working to raise $1,000,000 to start an endowment at Wolfson Children’s to ensure that international pediatric heart patients will always be taken care of when they come to our city for treatment.
We have formed some sweet friendships with families who come here for their child to receive life-saving care through the Will King Foundation and we have formed an unbelievable community of supporters in our city. Other than Will and his siblings, this might be what I am most proud of. Will is our spark, he is our why but you, this city, is our how. There are so many kind, committed, faithful people in our city who have fiercely backed this mission. People who truly want to make a difference and whole-heartedly believe that every child deserves a chance at life. I don’t think we will ever stop worrying about our children, not even when they are all grown up, but we can make the choice to trust God, be grateful for our blessings and do good in this world, even when it’s hard.
Courtney Hughes is a wife, mom, and founder of the Will King Foundation, a non-profit organization dedicated to honoring her son Will by supporting children undergoing life-saving heart treatment. Through the Foundation, Courtney has created a caring community for the children and their families who travel to Jacksonville for lifesaving treatment.
