Our daughter, Nashi Danielle, continues to defy the odds placed upon her.  Other than two minor incidents of pneumonia that landed her in the hospital, her health has been quite good, considering all that she has to endure on a daily basis.

My husband, Tovah, and myself (Terri) couldn't be more pleased. 

It seems that since our trip to Disneyworld, Nashi's health has actually improved.  No, she will never get any better, as far as her disabilities are concerned, but she hasn't gotten any worse, either.  We are actually enjoying our daughter, and the time we have with her.

We plan on making every moment count.  With a child in Nashi's situation, we can't be too careful.

Hyman has actually played with his sister, trying to make her laugh in his own special way.  Hyman no longer balks when he has to help with her "feedings" or diaper changes; he gladly takes on the role of big brother/caretaker like a champ.  It pleases us to see him being so receptive to his sister.

The last report from the doctor was good:  it is as though her disease has slowed; he feels that Nashi will live to be in her teens, maybe to near twenty, which would be nothing but a miracle.  Considering he wasn't expecting her to see the age of five, this is a huge accomplishment on her part.

I am planning on writing a book about Nashi, what it's like parenting a child who is severely physically handicapped.  Maybe it will help other parents who are going through this exact same thing; I'd like to let them know that they aren't alone in their struggles. 

All proceeds of the book will go to the Canavan Disease Foundation, to help spear treatment/options for sufferers of this horrible neurodegenerative disorder, and to give their families the hope they so desperately need.

I plan on getting started on this book sometime in the next few weeks.  If all goes according to plan, the book should be out by Christmas or early in 2009. 

I just hope that Nashi continues to enjoy the period of good health that she's currently experiencing.  It's so nice not to be worrying about her breathing or whether she is going to end up in the hospital again!

Yeshua bless and talk to you soon!

~Love, Terri Ben Ami, Nashi's mom (and also Hyman's). :)

For more information about Canavan disease, you can go to www.canavanresarch.org or www.jacobsladder.ca.