Faye Emerson here.  Hope this finds you all well.

We are doing pretty good.  We have our bad days as well as the good; thankfully the good days seem to outnumber the bad ones.

Renate and Ellen are busy, looking forward to summer vacation in a few weeks; as for Nicholas, our youngest child with special needs, he's just looking forward to sitting out in the warm sunshine and soaking it up, enjoying the fresh air, listening to the activity about him.

As of this writing, it's been several months since little Nicky last took sick with pneumonia; it's as if his disease (Canavan's) has slowed down to a dull roar.  I pray this continues; we are enjoying his not being sick or being in the hospital again!

We can actually live like normal people!  :)

People love our son; they think  he's the greatest thing since sliced bread.  They ooh and aaah over him, and they delight in trying to get a giggle out of him; Nicholas, even with all his problems, has the best giggle in the world!  When he laughs, we can't help but laugh right along with him!

Now, we do have some people who act rude or stupid around him; this is when I wish I could buzz their feet with the wheels of Nicky's chair, let them know that we don't accept (or tolerate) blatant rudeness!

Nicholas didn't ask to have this cruel disease; it just happened, and now we have to live with it.  We have to do all we can to ensure that our son has a (semi) normal life or that he is happy, comfortable, taken care of.

Nicholas needs us; we are not going to back out on him now, especially since we've been taking care of him for nearly five years now!  (He'll be five in July; I pray he makes it!  :)  So far it looks like he's going to!)

Before we had Nicholas, we never heard of Canavan disease; now that it is a part of our lives, we are going to do all we can to raise awareness and how people who have Canavan children can get the help they need to get through life.

We have a friend (met through the Internet) who had a child with Canavan's; the child recently died (she was nine), and they've started a foundation for families of children with Canavan's, and they've been exceedingly helpful, supportive.  We've since joined the foundation and we will do everything possible to ensure that a cure is found, so no more children will have to die or suffer Canavan's devastating effects.

If it were not for people like Terri Ben Ami, I don't know what we would have done.  Our world is a lot more blessed because of her and others who care about what happens to us.

Well, Nicholas is crying, so I'd best see what's going on with him.  I will write in here again; sorry this is so short and so boring; I don't have much of a life!  LOLOL  Until later, this is Faye Emerson signing off!  Blessings to you and yours!

~Faye Emerson.  :)

*To be continued.*