Big, dark-brown eyes that sparkle with life.  Long, long black lashes that are to die for.  Coppery red hair that is thick and very soft.  A cute little pug nose and a wide, knowing smile that can lighten up any room.  Chubby little arms and legs. 

All that makes up for one happy 22-month-old little boy.  Yet looks are deceiving.  Many people do not know that Taylor Zane is fighting just to survive unless they see the oxygen that keeps him alive or the feeding pump that we carry in a portable bag I wear on my shoulder whenever we go out. 

Taylor Zane was born seemingly healthy, but then we noticed that he was experiencing some "delays" and seemed rather weak and "floppy" in nature.  This truly troubled us, so we took our son to the doctor's.  The doctor, in kind, suggested that we see a specialist as he suspected that "something big" was going on with our son.  So we did exactly that.

The next few months were horrible: endless testing sessions, endless pokes and needles, hours of crying jags, and knowing there was really nothing we could do but endure the suffering.  It was awful!  Then we got the diagnosis.  Krabbe's leukodystrophy, a rare, fatal disease that would eventually end up killing our son before he even began to live.

Our son was not expected to live to the age of four.  He is now nearly two and is still plugging away, but it is clear that the disease he has has taken hold of his body.  He is frail, weak, and tethered to oxygen most of the time.  In addition to that, he has a feeding tube because his ability to eat and chew is so poor (plus he is prone to choking episodes that have already put him into the hospital).

The doctors don't think he will ever walk.  Therefore, we were forced to get Taylor a wheelchair.  More evidence of the cruelty that is Krabbe's leukodystrophy.  Most people think he has something like cerebral palsy or something like that, but whenever Gary (husband) or I (Addie) try to explain about Krabbe's, people look at us with blank stares or confused expressions on their faces, as they have never heard of it.

That's the problem.  Even though Krabbe's leukodystrophy is out there, it is not very familiar and therefore, there is no real treatment except to keep the child comfortable and keep the worst of the symptoms at bay.  It is a terrible, frustrating condition to live with.

Taylor is our only child.  We would have another one, but to tell you the truth, we are scared that any future children will have the same fate as Taylor, so we don't want to risk it.  We may adopt, but right now our main priority is Taylor and trying to keep him as healthy as possible.

We don't know what the future will hold, but we will be damned if we don't try to help Taylor in any way we can.  We have had him this long; we certainly aren't going to give up on him now!

~To be continued~