Kaylee was born on October 22, 1999 after a relatively uneventful pregnancy. At 7 lbs., 15 ounces, she was given a clean bill of health. My older daughter Alli, was thrilled to be a big sister. 

Kaylee achieved all of her milestones on time until it came to walking. A couple of wobbly steps at 15 months still hadn't developed into more than that at 18 months.

Concerned, I took Kaylee to a pediatric orthopedist. She was examined and x-rayed from her hips to her toes. I was told that she looked fine, but if she wasn't walking in two more months, she should see a neurologist.

As luck would have it (or so it seemed), Kaylee started to walk about 2 weeks after that appointment. I was overjoyed! She was still wobbly, but she was walking across the room!

After a month of waiting for her gait to stabilize, I was getting nervous. In September 2001, I took Kaylee to a neurologist, who performed blood and urine tests for metabolic diseases, and an MRI. 

He then pronounced my 2 year old baby with ataxic cerebral palsy. It hit hard, but we were assured she wouldn't get worse, as CP is an injury to the brain, and therefore non-progressive.

Kaylee started physical therapy in November 2001 and was fitted with DAFOs. I was so proud of her. She was doing wonderfully, at least physically.  Emotionally, Kaylee was a roller coaster. She would start screaming out of the blue; she was just miserable. It took over an hour to get her to sleep every night.

Kaylee started regressing in the spring of 2001. The loss of her recently acquired walking skills required the use of a walker. CP doesn't get worse, right? Okay, mom's on the internet for a couple hours a night doing research. That's when I came across an article that said most diagnoses of purely ataxic CP are later found to be degenerative white matter diseases. That's when I knew...

We went to see a new neurologist who repeated the MRI. While awaiting results, I continued my research, and eliminated diseases one by one until I was left with one - MLD.

Her neurologist called with the results - white matter changes, suggestive of Metachromatic Leukodystrophy.

From June - October 2002, Kaylee has been tested to confirm this diagnosis and it has now been confirmed as classical MLD. 

Now, I'm trying to take our days one at a time.