Jameison Adonis Christian (also known as JAC) was born on the 1st of July, 2016. He was a fast learner, happy and full of joy. Our son loved being outdoors and the activities that came with it, no matter the temperature.
When we were inside, his interests consisted of watching television with his father, but not the traditional cartoons like many other small children. Football and Formula 1 were his favorites. For the first six months of his life, everything was perfect. That was until January 2017.
It was the end of January and an uncontrollable domino effect was about to take hold. It started when JAC caught a cold. Of course, this is not something that is normally a cause for concern, but we also noticed something was out of the ordinary. The cold just refused to go away.
We brought him into the health clinic several times, with extreme exhaustion being added to the growing list of symptoms. Each time we were sent home with nothing more than cold medicine. To the point that the nurse actually began to get annoyed, stating "you can't just keep coming in every week". This went on until March.
One day in early March, an infection located on his buttocks began to show and then aggressively spread within days. This was the first sign of a larger life threatening issue.
Finally, we decided to take JAC to the emergency room, and upon check in, we showed a picture of the infection to the nurse at the front desk. Which quickly prompted her to get a doctor. Skipping the entire line for immediate medical attention and blood work.
Once that blood work came back, they quickly realized that JAC was far too ill for their capabilities. This resulted in an emergency life flight to Walter Reed Naval Hospital in Bethesda, Maryland.
We honestly had no idea what was wrong and worse yet, neither did the doctors. JAC was having red and white blood cells, along with platelets infused into his small body, but it was not until two days later that we got the news.
Our eight month old son was diagnosed with Hemophagocytic lymphohistiocytosis (HLH) and his life was in grave danger. This required an aggressive offensive against the illness that included several rounds of chemo-therapy and a bit of a following amongst those that work in the other departments.
Thankfully, due to the tireless efforts of the men and women of Walter Reed Naval Hospital, he was released in May of that same year. Unfortunately, this would not be the end of our nightmare because JAC would still need to get a bone marrow transplant.
Making several trips between Walter Reed Naval Hospital and Children's National Hospital in Washington D.C. We began the long and arduous task of the bone marrow transplant process. Eventually the Children's National Hospital found a donor. Though not a 100% match, they still felt as though this would not be a problem, this decision would turn out to be pivotal.
After some time, a date was set January 2018 for JAC to get his transplant at Children's National Hospital. Unfortunately, it would be pushed back on two occasions due to the common cold, as it was winter at the time. It was not until March 2nd, 2018 he would check in for the last time.
The beginning of the entire process was relatively uneventful, as everything was moving along as planned. So well that, even as the chemo-therapy process began to unfold, the doctors and nurses made several remarks about how good JAC was handling the entire process. He rarely cried and took his medicine "better than even some of the teenage patients." Something that we were not all that surprised about, because the men and women of Walter Reed said the same.
JAC remained in very good spirits and maintained his usual high level of energy. Eventually learning how to play basketball with one of those mini hoops, even though soccer was his real love. This would soon change once the actual transplant took place, after which everything began to take a drastic turn for the worse.
In a matter of days we all began to realize that JAC's body was rejecting the donated marrow. Eventually this turned into full blown Engraftment syndrome, a condition that comes with fever, skin rash, pulmonary edema, weight gain, liver and renal dysfunction. All of which damaged several of JAC's organs along the way. It would continue to the point that he was put into a medically induced coma in order to receive dialysis treatment for the massive amount of fluid that began to collect in his body.
Sadly, this is where the story of Jameison ends, as he would never wake back up. He passed away at 10:58 am EST, on April 8th, 2018.
Still to this day, there is not a single day that goes by, where he is not thought of at least once. Forming this organization is probably one of the best ways he can be remembered. With enough time and money, we can all make strides towards JAC being one of the last that will be missed.