Chazz is our eight year old son.  He is the reason our family is made whole, stronger, more able to withstand life's hardships.

Chazz (Charles, but he's known to us as Chazz or Li'l Chuck) is a child, a child with a mission.
 
He was born with Canavan disease, a neurodegenerative disorder that produces increasing disability, yet he has the personality of a star.  He is always laughing, it seems; nothing seems to get him down for long.

My name is Heidi, Heidi Bagnold.  I live in Fremont, California, with my husband, Abe (Abraham) and our three children, 11-year-old Marilyn, eight-year-old Chazz, and our youngest, three-year-old Dieter.  All of our children look like me:  they have my Nordic (German/Scandinavian) heritage evident in their fair hair, blue (or grey) eyes, and fair skin.  They are absolutely beautiful.

Our children are our world.  They've taught us about resiliency, patience, love, understanding, acceptance of the inevitable, in particular, our middle child (Chazz).

Chazz was born seemingly healthy, a beautiful little boy who announced his arrival into the world with an ear-shattering cry.  He seemed to be developing right on target; however, at about the age of six months, we began to notice that something might be wrong.  He wasn't tracking us with his eyes, and for some reason he had trouble holding his head up.

By the time he was a year old, he acted like he couldn't see us, and his cry sounded abnormally harsh.  We got scared, so we immediately took him to our doctor, who suspected something genetic was going on.  He suggested to us that we see a specialist specializing in genetic disorders.

This was when our world as we knew it was forever changed. 

After a period of extensive testing, it was soon discovered that Chazzy had a rare neurodegenerative disorder called Canavan disease.  It caused increasing delays in motor, mental, and physical development, along with failing eyesight, and ultimately, death by the age of five.  In short, our beautifully healthy son would become totally helpless, requiring twenty-four medical care to keep him alive as long as possible.

The news was, as you can imagine, shattering.  There's nothing more upsetting to a parent to hear that one of their children is going to die because they unknowingly carried a faulty gene.  I was the one who carried that gene, but it'd been passed down through my husband's family through the generations.

We cried like there was no tomorrow.  We thought our world had ended.  We went home and we prepared ourselves, prepared our son to die.

Chazz, however, had other plans.  He did not die, much to everyone's relief.  He thrived.  He grew into a sturdy little boy with a loud, belly laugh, thick, curly hair, and sparkling blue eyes that lit up his face whenever he smiled, which was often.

He did become more disabled as time went on.  By the age of six, he was totally without sight, unable to walk, talk, even hold his head upright.  He spent his days lying in a special reclining seat, sitting in his wheelchair, or lying in his hospital bed, where we, his family, took loving care of him, providing his most basic needs.  He lost the ability to go to the restroom on his own (he was now wearing diapers, like an infant), and he had to be fed by a tube in his stomach because he'd lost the ability to chew, swallow.

Now we spend every four hours administering his medications (pain, seizures, antibiotics), feeding him five times a day, dressing, diapering him.  Chazz doesn't seem to mind; he loves the touch of our hands upon his skin; at our touch, he giggles loudly, and his eyes snap with joy, excitement.

His sister and little brother delight in playing with him.  They love singing to him,  holding him in their laps (well, Marilyn does; Dieter is too little to have his older brother sit on his lap), reading to him, making sure he is happy, comfortable.  They are very good with him; Marilyn has become very adept at handling his feeding tube and sometimes feeds him by herself.  When he has a seizure, she'll sit by his side, stroke his head, and sing to him until the seizure abates a few minutes later.

Dieter, meanwhile, pats his brother's face, and when he has a seizure, he cries; it's all we can do to try to reassure him that his older brother is going to be okay (which he usually is).

Sometimes Chazzy ends up going to the hospital with a respiratory or some other kind of illness.  The ambulance has to be called; times like this always disrupts our normal routine.  Here I am, trying to keep the kids calm when they see the paramedics tending to their brother, while trying to keep calm myself, trying to keep the children from seeing the panic that has overtaken me. 

At the hospital I stay by our oldest child's side, praying for him to come through this latest crisis.  Sometimes I don't leave the hospital for days, leaving Abe tending to Marilyn and Dieter.

I feel I have to be here for Chaz, just in case he might need me or in case something might happen.  If he were to die, I would want to be at his bedside as he slipped to the other side.

Well, I have to go:  time to hook Chaz up for lunch, give him his second round of meds.  I will write in here again soon; until later, this is Heidi Bagnold signing off!  Take care and God bless you!

~Heidi.