Kaylee was born on October 22, 1999, after a relatively uneventful pregnancy. At 7 lbs, 15 oz, she was given a clean bill of health. Her older sister, Alli, was thrilled to have a little sister.

Kaylee's only early difficulty was sleeping. She wouldn't sleep in her bed for the first four months of her life, only in her car seat! Her doctor didn't find it too unusual, because his child did the same.

She achieved all of her milestones on time until it came to walking, although she did roll across a room to get where she wanted to before she actually crawled. A couple of wobbly steps at 15 months still hadn't developed into more than that at 18 months.

Concerned, her doctor referred her to a pediatric orthopedist. She was examined and x-rayed from her hips to her toes. We were 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. We were overjoyed! She was still wobbly, but she was walking across the room!

Meanwhile, her mental ability was above average, and she was putting together six-word sentences with correct sentence structure before she was two. She referred to herself as “I”, not as “Kaylee” much sooner than most kids do. She was very independent, much preferring to do everything for herself. She loved to play with her “babies”, carrying them around with her, covering them with blankets to sleep, feeding them with a spoon, changing their diapers, etc.

After a month of waiting for her gait to stabilize, her mom was getting nervous. In September 2001, we took Kaylee to a neurologist, who performed blood and urine tests for metabolic diseases, and an MRI. After getting back the results on the test, he diagnosed Kaylee, now two years old, with Ataxic Cerebral Palsy. It hit us hard, but we were assured that at least 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. We were all so proud of her. She worked really hard to get around, and didn't let the braces slow her down too much. Emotionally, however, Kaylee was on a roller coaster. She would just start screaming, for no apparent reason; she was just miserable. It took more than an hour to get her to sleep every night.

Then Kaylee started regressing in the Spring of 2002. The loss of her recently acquired walking skills required the use of a walker. She started having short spells where she just didn't seem to be aware of what was going on, and we'd play the “Earth to Kaylee” game. Her eyes were drifting apart, not working together. She was having problems gauging depth, reaching for something far short of where it was lying on the floor. We took her to a pediatric ophthalmologist, who said that her problem had to be neurological, because structurally her eyes were perfect.

Since CP doesn't get worse, Mom decided that it's got to be something else, and spent hours every night on the Internet doing research. She came across an article that said most diagnoses of purely Ataxic Cerebral Palsy are later found to be degenerative white matter diseases. That's when we knew…

In July, we went to see a new neurologist at another hospital who repeated the MRI. While awaiting results, Mom continued her research, and eliminated diseases one by one until only one was left – Metachromatic Leukodystrophy. Kaylee's neurologist called with the results – white matter changes, suggestive of MLD. Blood was drawn and sent to Dr. Wenger's lab, and the results came back negative for MLD. He told us by phone that Kaylee did not have MLD. Urine analysis performed at Mayo indicated that she did. We subsequently found out that there was a defective substrate used in the original testing at Dr. Wenger's lab, and that on repeat analysis, Kaylee did indeed have MLD.

Meanwhile, life went on. In August, she tried to get down from a chair, and all of a sudden realized that she could no longer walk. She looked up and said, “I can't walk.” Mom just answered her, “That's OK, Kaylee. Mommy will carry you wherever you need to go.” The frustration she felt was plain to see. Little kids feel the depression that comes with an illness like this too. You could see how much she wanted to be able to do what she could no longer do.

Kaylee was accepted into the preschool program at our local Achievement Center, for children with developmental disabilities. As it turns out, she loved going there in the beginning, even though she couldn't do too much. By the time of the Christmas program there, she could no longer use her hands, and could not talk anymore.

In January, Make-A-Wish sent us all to the Florida Keys for some fun in the sand and beach time. She was already to ill to enjoy Disney, but we knew she'd love the sand. Unfortunately, she had her first seizure on the plane on the way there. She wasn't able to drink too much, and ended up dehydrated, so the next day, we went to the hospital there. She was put on Dilantin to prevent further seizures until she could see her neurologist here in Cleveland. The ER doctor wrote the prescription for five times the amount, and she couldn't wake up. We went the next day to Miami Children's Hospital, where she was monitored for the Dilantin levels in her blood until they felt it was safe enough for her to leave. She was discharged on Thursday, and we flew home on Friday. She got absolutely no benefit from the trip; in fact, it was the beginning of the end for her.

When we got home, she still couldn't eat enough, so back to the hospital the next day. She stayed there for eight days, and went through all sorts of tests. She did come home for a few days before having a Mic-key feeding tube put in on Valentine's Day. She began to gain weight, and was more comfortable in general. In April, she caught a cold, which turned into pneumonia. She suffered another seizure on Good Friday, and slept through Easter. On Monday, her body refused her feeding, because her stomach had stopped working. She had another seizure that night. She was awake for a brief time on Tuesday, but never awoke after that. We kept her medicated for her spasms, seizures, and pain. She didn't respond to the antibiotics, and we chose not to re-hospitalize her. She'd already been through so much.

Kaylee Grace passed away on Saturday, April 26, 2003. She was 3 years, 6 months and 4 days old. She was the strongest and bravest little girl I will ever know, and I've been blessed to be able to call her my granddaughter.

God bless you Sweetie, Grammy loves you.