November 23, 2010, Nashville, Tennessee~

My name is Johnathon Irwin-Allen Sandusky.  I am nearly 18 years old.  

I live with my family in Nashville, Tennessee.  I was born in Germany, near the town of Munich, but my real mother died while giving birth to me.  I never even knew her.

I was adopted when I was only a few months old.  I was flown to America to be put up for adoption; a family in Tennessee adopted me shortly thereafter.  I was the first child they adopted.  They are the family I have really ever known, but when I was eight, I was reunited with my biological brother, Erich, who is seven years older than me.  That would  make him 24.

I was born seemingly healthy.  The only real issue I had was the fact that I was born too early.  I weighed only two pounds.  I was a premature infant.  I had some problems breathing, but other than that, I was quite healthy, even though I was born very small.

Anyway, I was adopted when I was a few months old, as I said just a little bit ago.  At first, it was just my parents and myself, but then a week later, a little girl of mixed racial heritage joined the family.  Her name was Ronee'.  She became my sister.

I was a pretty hefty fellow (nothing major under the sun when it came to my health), but when I was about a year old, I started having problems.  I would fall a lot, and climbing stairs proved to be very difficult for me.  It started getting worse, so mom and dad became concerned and took me to my pediatrician.  The pediatrician ran some tests; he soon advised them to have me see a specialist, because he felt that I had something going on with my muscles.

I had all sorts of tests.  I am glad I don't remember them; I was just a baby.  Soon the results came back. It was not good news.  I had the beginning signs of muscular dystrophy, a neuromuscular disorder which would result in weakening of my muscles to the point to where I would need a wheelchair or braces and/or crutches when walking.  The kind of muscular dystrophy I had was the fatal kind: Duchenne's.

As you can imagine, my parents were devastated.  Yet they tried to help me as best as they could as I slowly began to lose the strength of my muscles and helped me cope with the changes in my body.  First my legs started going; it got to the point to where I was falling more than what was already usual for me, and I had to wear braces on my legs for support.  I also had to use crutches because my balance was not as good as it used to be.  I needed help when I walked.

By the time I was five, I was on crutches most of the time.  By the age of seven, I was using my wheelchair, but I could use my crutches for shorter trips.  Back then, I had no other problems.  My breathing and my heart were working fine.

At about the age of ten, ten and a half, I was starting to have the first inkling of trouble with my lungs.  I wasn't able to breathe nearly as well, and I would often get out of breath whenever I would do something strenuous.  It got to be annoying.  When I was 11, I started using oxygen at night.

I seemed to be doing well for the next several years, but then, at the age of 15/16, I was starting to go into respiratory/cardiac failure because my heart and lungs were starting to get affected by the muscular dystrophy.  My breathing was rapidly becoming worse; I had to come to terms that I was facing my mortality for the first time ever since I was diagnosed as a baby (though I had outlived most Duchenne muscular dystrophy patients by a good ten to twelve years).

That was highly surprising because doctors told my parents that I wouldn't live to see the age of five.  That I was still alive was nothing short of miraculous.

Just after I turned 16, I had a tracheotomy performed.  I would now have to breathe with a hole in my throat, hooked up to a ventilator.  That was very hard to get used to.  There was always such a huge production to get me around to different places and lugging all my medical equipment with us as we went.  I also had to deal with getting suctioned (that, in itself, was extremely painful; it still is to this day; I hate it!) and getting repeated pokes (blood gases and other blood tests).  I felt bad for my family because I was causing more in the way of grief, and I felt that all what I was facing with my MD was somehow my fault.

I became extremely depressed.  Just over a year ago, my depression was so bad, I wanted to kill myself, but knowing I couldn't, because I was becoming weaker and weaker.  It was to the point to where I wanted nothing more than my MD to consume my body and to finish me off, so I wouldn't have to put up with all the heartache I was going through.  It hurt me to see my family in pain, and I blamed myself.

I started seeing a psychologist, who helped me work through my feelings of self-doubt, fear, and suicide.  I learned that I could still have a good life, even with all the new challenges that I was facing.  Now I see that my life is worth living, and even though I can now no longer walk or breathe on my own, I can still talk, blink my eyes, move my hands and legs, sing, do sign language, write (with the help of a special computer), and so much more.  I am still a very active member of my church, and life is very good for me.

I still don't know what my future holds, but there is one thing I don't have to worry about: where I will be after I die.  See, when I was seven, I accepted Jesus Christ as my Saviour after seeing this drama at the church my parents attended.  It scared me so bad, I knew I had to "make things right", so I asked Jesus to come into my heart.  I haven't been the same, and I know that without a doubt that, when I die, I will be in Heaven, to be with God, Jesus, and the angels forever and ever.  

Sometimes I do worry about my health, but as long as I am hanging in there and not getting any worse, I can be satisfied with that.  I do worry when the "other shoe" is going to drop, but I can now concentrate on attending college and thinking of getting married to my longtime girlfriend.  I'd like to adopt some children since it is not possible for me to become a father the natural way.  I don't want to risk giving any of our children the same disease that I have had to live with for most of my life.