Beatrice Everett here.  Thought I'd update you on what's going on with our family, in particular, our only child, Jaden, who's two years old, and has Tay-Sach's.

He recently got out of the hospital a little over a month ago.  Pneumonia.  Left his lungs in a weakened state.  He's been on oxygen; however, our doctors are pleased at the progress he's been making, so the oxygen therapy may be discontinued.

I always worry whenever our little boy becomes ill.  I know he can't help it, but dang, I wish God would give us a break; or at least heal our son of his illness!  Even though he's only two, our little boy has suffered so much heartache, much more than what most adults do their entire lives!

I feel guilty that I carried the gene that led to this devastating diagnosis a little over a year ago.  Since then, our lives haven't been the same; we've watched in terror as our little guy became more disabled, and knowing that there wasn't a darn thing we could do about it. 

We don't know how much longer he'll live (doctors are still saying he will be gone by the time he reaches the age of four or five), but we continue to pray for a miracle, or at least let him live long enough to see a cure for Tay-Sach's or any other devastating neurogenetic disease/syndrome.

Jaden is still able to eat on his own (for now), but doctors are still thinking of putting in a stomach (gastrostomy) tube for feedings before the year is out.  All the more reason to hate his having Tay-Sach's.

Tay-Sach's disease is stealing my precious baby boy away from us, and it's enough to make me want to cry, hate God for what He's doing to us!

What makes it worse is that we aren't even Jewish or Cajun French (for some unknown reason, Tay-Sach's seems to hit these two ethnic groups particularly hard).  We're Scottish/Irish/English!  It's crazy!!

I just thank God we don't have any more children besides our son; however knowing that your child is going to die within a few short years is hardly worth reason to be joyful.  We often cry, ask questions, rage at God, other people. 

Well, Jaden has been sleeping for the past few hours; I think it's time to get him up.  I will write in here again another time; hopefully things will continue to improve for our child, and hopefully he won't get sick again!  Just keep us in your prayers, and pray that a cure for Tay-Sach's is found in our child's lifetime!  He's too little to deserve all of this!!

~Sincerely, Jaden's mommy, Beatrice.  :(

*to be continued.*