I wish you could meet my son, Jacob Ibriham, in person.  You would probably fall in love with him.  

That isn't very hard to do.

Jacob is a carbon copy of myself.  He and I have the same wavy dark-brown, nearly black hair, wide brown eyes, same cleft in our chin, and dimples in our cheeks when we smile.  He is a very handsome little guy, if I must say so myself! :)

Jacob seems like a typical little boy at first, but then people notice the fact that he is in a wheelchair.  He cannot walk.  He also cannot talk, but he does seem to recognize people.  Eventually, he will lose his hearing and sight.  Jacob was diagnosed with a cruel genetic disorder that robs babies of their developmental, physical, mental, and cognitive skills until they are rendered helpless and unable to do anything for themselves.

I had the gene and so did my wife; we unknowingly passed the Canavan gene to Jacob.

We first noticed the signs when he was roughly between six and nine months old.  He had problems tracking with his eyes, seemed very weak and floppy, in regards to his muscle tone, and was behind kids in terms of reaching developmental milestones.  

We were very worried, so we took Jacob to our pediatrician, who in kind, suggested that we see a specialist; the specialist then referred us to a geneticist: the specialist suspected that something genetic was going on with Jacob.

That started the downward spiral of our lives, culminating with the diagnosis of Canavan's.  Jacob, by now, was a year and a half.

Canavan's, for the unitiated, is a terrible, cruel disease that is prevelent in people who are mainly Jewish (though it can be found in other ethnic backgrounds as well).  Any dreams you might have had for your child vanish instantly.  

You have to come to terms that your child will only get worse and will need more supportive care down the road.  Eventually the child needs to be in a wheelchair and have a tube surgically placed in their belly because they lose the abuility to suck, swallow, and chew.  

Most children who have it (Canavan's) don't make it to their fourth or fifth birthday, although some hardier souls live into their teens or even 20s before finally succumbing to heart and/or respiratory failure.

Anyway, back to my story.  Jacob is now three years old and while he can see and hear for the time being, he really can' t do anything else.  He is losing  his ability to swallow, so a feeding tube will probably be placed within a month or so.  Another hospitalization.  We are not looking forward to that.  He's been in and out of the hospital for choking or pneumonia epsisodes for the past six months; the hospital has, by now, become our second home.

Once we learn how to feed our son, things will be easier, but right now, Beth (that's my wife) and myself are scared to death.  We are so worried that we will do something wrong or end up hurting Jacob somehow.

It is very discouraging to look at our son because he will never go on a date or get married, have a family of his own, learn to drive a car, or get a job.  He will never know what it will be like to be an adult with responsibility.  

He may get older, but doctors are giving him maybe five to ten years max.  That isn't a very long time, especially when you take into consideration that there are people in this world who are living well into their 100th year.

We get angry with G-d because we often don't understand why our family has to suffer.  How can a loving G-d do this to an innocent little child??  We feel so alone and are scared for Jacob's future.  

What kind of future is he going to have lying in a hospital bed, having everything done for him, day and night??  What kind of future is he going to have, unable to see, talk, walk, hear, eat, even go to the potty on his own??  That isn't a life; it's a death sentence!

We would do anything for our Jacob, to keep him alive for as long as possible, but personally, I don't see how we are going to provide for him when I work long hours at the factory and Beth has her job at the law firm!  

We are going to have to do some serious talking between ourselves (and our employers) about what we are facing and try to find out a way how we are going to afford the medical equipment that we will need down the road!

~End of part one.~