Not long after little Ethans life began it almost ended. One night, at around six months of age, Ethans parents were awoken during the night to his crying, they found him in a terrible state…… his little arms and legs looked to be almost like raw meat and much of his face was like that as well. They where terrified and had no idea what was going on. They immediately gathered little Ethan up and sought medical attention. (All the while what ever was causing this terrible thing was progressing very fast)
The doctors were probably very puzzled at first, but one thing they did know quick was that little Ethan could not survive this continuing to progress for very much longer. A decision was made (not sure of the exact time) that the only chance Ethan had to survive was to remove all four limbs and much of the tissue from his face ! Ethan’s rare problem was diagnosed as (Purpura Fulminans)……. You can (CLICK HERE) for information on this rare condition.
The first time little Ethan was flown by Captain John on an Angel Flight was November 7th 2008. One year before I (Nevin) started flying Angel Flights with John. At the time, little Ethan was one week shy of being a year old and he had already had all 4 limbs removed and much surgery on his face, he weighed only 8 pounds ! Ethan’s flights were from Wallace NC to Cincinnati Ohio to the Childrens Hospital….. this usually consisted of 2 legs with Lewisburg WVa being the middle point.
John recalls on this, his first flight with Ethan (from Wallace NC to Lewisburg WVa) that he was greeted by Ethan’s mom and dad (mom would by flying with Ethan). John said that little Ethan seemed no bigger than a handful and of course he had no arms and no legs and his little face had not much of a nose, just a little hole for breathing…. but one thing he did have was a SMILE ! Ethan’s mom ask John if they needed to use the car seat in the airplane, John had noticed that they seemed to have a little problem with it due to Ethan’s little body not fitting so well in the seat….. so John told her that if she liked she could just hold him in her arms during the flight (This is allowed if a child is under one year old)
When it was time to load up, Ethan’s mom asked John if he could hold Ethan while she got in and John remembers how little he felt in his hands. He recalls that he was thinking at the time that little Ethan was less weight in his hands than his cats were when holding them. The flight went well and during the flight John noticed that at times little Ethan was propped up on his moms lap with his arm stubs up against the window, all the while looking out enjoying the view, just as excited as any little boy would be ! This first flight with little Ethan really found a permanent place in Captain Johns mind and heart.
John and I flew little Ethan two more times after that first flight in 2008. The second flight for John with Ethan (my first) was December 10th 2009. This is interesting because it was Captain Johns 2nd Angel Flight for little Ethan and it was my 2nd Angel Flight flying with Captain John !
I remember that flight really well……. John had filled me in on little Ethan and my heart melted thinking about such a horrible thing happening to such a young innocent child……. I did not know how my emotions would react when I actually met him (All I could really think about is how sad this was (and I am really a positive person trying to find good in everything)….. but all those sad thoughts left me almost immediately when the first thing I noticed was how happy he was (just like a normal little boy that did have his arms and legs)……. on top of that, I was engulfed with a very warm soothing feeling when I experienced very quickly the love that surrounded Ethan and his family, it was amazing ! It really made me realize, even more so than I had before this, of what really matters the most in life…. certainly it is not material things, and it is not even having arms and legs, it is the love and compassion and taking what you have and making the most out of it ! This was only my 2nd Angel Flight with Captain John and my thoughts were originally, boy…. all this flying is going to be GREAT ! ….. and that is true, but what turned out to be more important than even the flying was getting to experience and be a part of (even though maybe just a small part ) of the lives of so many people that are dealing with so many difficult hardships, but yet, to be around them you would think to yourself…..wow, what courage and strength !
On this flight, we flew Ethan and his dad to Lewisburg WVA where they continued on to Cincinnati Ohio. The day was very cold and windy with snow showers over West Virginia. But even with the cold and the bumps, little Ethan really enjoyed flying. At this point in his little life (now a little over 2 years old) he was doing really well, getting adjusted to living with what he had and just as happy as any little two year old boy would be, maybe even more, because this little fella was truly surrounded by overwhelming love from his family ! It really warmed our hearts seeing little Ethan growing and loving life even though so much had been taken away from him in the beginning.
The third flight with Ethan was on May 11th 2015, he was now seven years old (but still only weighed 30lbs) and he was doing great ! We flew him and his dad this time from Wallace NC to Abingdon Va. He had such a happy attitude about him that was almost magical….. and the love that surrounded him and his dad just touched your soul, it was so evident and inspirational ! Looking back, I am sure that if the doctors had not removed little Ethan’s arms and legs he would not be alive today, but I am also sure that the love and compassion that little Ethan has been surrounded by has been just as important as the doctors saving his life…… the doctors saved his life, the love gave him life ! And that love, you can tell, radiates out of him as well. Just looking at little Ethan (in his “NINJAS” tee shirt) with his dad…… seeing all the love and care just melted our hearts !
We have not flown little Ethan since then, but we have heard that he is doing great and getting to experience life to the fullest, doing things (that are amazing for him) that a young boy does. And even though he has no arms and no legs he has a full rich life with all the love and support of his great family (his mom and dad and siblings). Boy what a lesson we can all learn from this….. It really does not matter near as much what happens to us in life (because so many times that is out of our control)…… as much as it matters how we deal with it !
This is definitely a memory of one of our precious passengers thru the years that started out as great sadness that evolved into great happiness !