December 17, 2008, Sonora, California, 8:32 a.m., P.T.~

Dear Terri Ben Ami~

Hello!  You don't know me from Adam; however, I ran across your page on the Internet, and I had to write, especially upon learning that one of your children has Canavan disease.

I, too, have a child with Canavan's.  Our four-year-old son, Tyle Nehemiah, has it; he was diagnosed with the condition when he was only six months old, and it was a numbing, shattering experience.  It was one of the worst things we could have ever faced as parents.

Doctors don't think our son will live to the age of six.  It's been a heartbreaking journey.  Now at the age of four, Tyle is blind, is unable to sit up, feed himself, go to the toilet on his own, and can't walk or talk.  He just lies there in his hospital bed, waiting for someone to take care of him, be it feed him via his stomach tube, give him his meds, change his diapers, or dress/undress him, or even entertain him.  It's been hard on Ted (my husband) and myself; however, it's been worse on our other child, six-year-old Berry Michaela.

She often gets mad at Tyle because he can't play with her; she has to be the one to play with him, and she hates having her little friends over because they don't understand why her little brother is the way he is, and he's an embarrassment to her.

I sometimes wish I never tried to have children; otherwise, we wouldn't ahve found out that we carried the defective gene that caused our son to have Canavan's.  (Incredibly, though, our daughter does not have it:  she is perfectly healthy, which has been nothing short of miraculous.)

I somtimes wish that we could put our son in a nursing home, a hospital, or perhaps, an institution; it may be easier, but in the long run, that may end up being worse because he wouldn't get the round-the-clock care he needs in order to survive.  So we take care of him ourselves (mostly me and Berry when she's not at school); Ted works too many hours at his job.  (He's an insurance adjuster.)

I often cry when I think of how Tyle could have been.  He could have been a normal, happy, healthy little boy, running around, playing football or baseball, or playing with his sister.  Now he will never get that opportunity.  His days are spent getting care or fighting for life in the hospital; he can get sick so easily, and when he does fall ill, our lives stop, just like that.

We're always scared that we are going to lose him.  I don't know what I'd do if Tyle were to die!

Do you ever get complicated feelings like that with Nashi?  How do you handle it when she is in the hospital or desperately sick?  Do you have anyone to help you when you go out for the evening?  How do you manage to raise your other children in addition to caring for Nashi?  I'm at the end of my rope at times, and I'm beginning to wonder if I'm going crazy!!

Well, Terri, I've bent your ear long enough.  I have to go now; Tyle's nutrition pump is going off again; seems that thing is on the blink!  I am going to have to call the provider and argue with them again about that damned pump!  I will write again soon; please write back!  I'd like to know that I'm not the only one facing this, having a child with Canavan disease!

~Most sincerely, Heather Danielle Abramson, Sonora, California.  :(