JUST WHEN I FELT EVERYTHING WAS PERFECT…
One moment changed my world forever, but I quickly transitioned from being helpless to empowered, and my family and friends joined me.
In August of 2011, I felt happier than ever before. My world was perfect.
With the birth of my son Hunter, our family felt complete. He needed an extended stay in the Neonatal Intensive Care Unit, but when my husband Curtis and I were finally able to bring him home, we felt on top of the world. A weight lifted off our shoulders, and we quickly settled back in at home. Curtis was working as an executive at a company he had co-founded, and it was really taking off. We had everything we wanted in life.But just two weeks later, Hunter stopped moving his legs. We were concerned, and so was the pediatrician. He gave Hunter a very long examination and scheduled a follow-up appointment.
Hunter developed a cold a few days before that appointment and was really struggling to breathe. When I took him to the doctor, they sent me to the emergency room at St. Louis Children’s Hospital, and Hunter was admitted.
We knew something was wrong, but we didn’t know what…yet. The next day, Hunter received a diagnosis.
IN AN INSTANT, MY WORLD CAME CRASHING DOWN.
The doctors told us our eight-week-old son had Spinal Muscular Atrophy (SMA). They told us he would lose the abilities to move, eat, swallow, and eventually breathe. They told us there was no treatment and no hope. They advised us to enjoy what time we had left with him, which they estimated to be three to five months. We left the hospital with Hunter and a prescription for hospice.
My heart broke into a million pieces, but we weren’t going to wallow in our grief. That just wasn’t our style. Curtis began researching potential treatments immediately, and the next morning, we took Hunter on his first trip to the zoo.
Giving up was never an option for us. Curtis routinely challenged the status quo as an entrepreneurial engineer. How could he not do the same for Hunter? We made a pact to save Hunter’s life, and we knew it would be the greatest adventure of our lives.
Curtis identified several potential treatments that could both prolong and improve Hunter’s life. However, doctors shot down each and every option.
IT WAS CLEAR WE WEREN’T GOING TO RECEIVE HELP FROM THE MEDICAL COMMUNITY. IF WE WERE GOING TO SAVE HUNTER, WE HAD TO DO IT OURSELVES.
We weren’t going to give up. We turned to friends and family, who included an amazing group of doctors and researchers.
Within just eight weeks, the tide was turning. A researcher provided us with the chemistry for a potential treatment, we commercially manufactured the treatment, and we found a doctor and hospital in Mexico to administer the treatment. At sixteen weeks old, Hunter was the first person with SMA to receive a potentially life-saving treatment.
WE TOOK A CHANCE AND WERE REWARDED BEYOND OUR EXPECTATIONS.
At the end of the treatment, Hunter reached up and grabbed Curtis’ finger with his hand — something he had never been able to do before. We witnessed a medical miracle.
Hunter continues to improve now, but he requires treatments every six weeks in Mexico. His life-saving treatments are illegal in the US because they are not FDA approved.
I believe God gave us Hunter not only so we could help save him and others with SMA, but also others with rare diseases and terminal illness. The Hunt for a Cure adventure shows what is possible when you challenge a broken system. The system failed Hunter, and it continues to fail the others with SMA, rare diseases, and terminal illnesses.
I’m not okay with this.
EVERY LIFE MATTERS.
EVERY LIFE DESERVES A CHANCE.