My name is Heather Danielle Abramson.  I live in Sonora, California, with my husband, Ted, and our two children, six-year-old Berry Michaela and four-year-old Tyle Nehemiah.  We also have two Birman cats named "Cuddles" and "Furball".

I am a stay-at-home mom while Ted works; he works as an insurance adjuster.  I have to be at home, especially since our youngest child is severely disabled.  At the age of four, little Tyle can't walk, talk, or even feed or dress himself.  He was born with a little-understood disorder that is fatal; doctors don't think he will live to the age of eight. 

It's been a very hard journey with our son.  We don't know why he was born with Canavan disease, but we didn't suspect anything was wrong until he ws about the age of two/three months.  He was incredibly floppy, he cried all of the time, and his eyes didn't seem to track; this was when we started thinking that something was wrong, so we had him undergo genetic testing, to see what was going on.

We wish now we never went through this.  For we would have never found out that we were the carriers of a fatal neurodegenerative disease common to Eastern Jews, and we unknowingly passed it on to our second child.  (Incredibly, our daughter Berry was unaffected; she's perfectly heathy, which has been nothing short of miraculous!)

Now, because of his illness, our days are filled with caring for not only our active six-year-old daughter, but a sickly little four-year-old who requires twenty-four-hour attention.  He often ends up in the hospital with respiratory (or other) infections/illnesses because he can't seem to fight off the germs himself, plus he can't chew or swallow; this makes him prone to getting sick.  We have to feed him by tube (he has a tube in his stomach), and we give him his "food" every five hours, plus every four, we squirt his medications through this tube.

The medications help prevent seizures, gastric reflux, muscle spasms, and other matters. 

Our son has physical therapy every couple of days, to keep his body limber, supple.  Nurses come help care for him when we can't; in fact, one of the nurses stays with us; that way, she can  help Tyle if he has a problem, which we greatly appreciate.

Berry often doesn't understand why her little brother can't play with her, but she helps in caring for him; she is very loving, tender with him, and she is a very good little helper.  We often feel guilty because we feel we've cheated her out of a normal childhood, but we are glad that she is very accepting of her brother.  Sometimes she does cry about what's happened, but more often than not, she is very compassionate towards him and would give her life to protect him from harm or danger.

We met a family yesterday who has a daughter with Canavan disease; we met them at the hospital, where we had taken our daughter for her appointment with Dr. Myanmar.  Turns out that Dr. Myanmar is their daughter's doctor as well!  Their daughter, Nashi, is nine, older than Tyle, a really cute little girl. 

Well, I am going to go; have to get ready to go to the store.  Trying to finish up the Christmas shopping, you know; still have to shop for Ted while he's not at work.  Annie (nurse) is here with the kids, so they won't be alone while I'm gone; I can get away, even if only for a few hours.  I will write in here again soon; until later, this is your new friend, Heather Abramson, signing off!  Yeshua bless!

(((HUGS))) Your new friend, Heather.  :)