Kaila M. - Quilt Finished in 2006

Born: April 26, 2001

Illness: Rett Syndrome

Kaila M.'s Story

written by mom Shirley

Kaila was born April 26, 2001 at 5:55pm weighing 7 lbs and 6 ounces.  She was such a good baby, she was always interested in what was going on, she ate well, she played with toys, looked at books, and loved the outdoors.  Kaila's first word was "gobble-gobble" because she watched turkey hunting with her dad.  Kaila walked at her first birthday party and loved the cake.

I started to notice problems when Kaila was about 20-22 months old when she didn't have much speech besides mama, dada, and then gobble gobble was changing to gob-gob and then gug-gug and then it was gone.  I noticed that Kaila was forgeting other things like how to do the hand motions to Wheels on the Bus.  The doctors weren't concerned because children often slow their learning down in one area to learn in another. 

Kaila had gone through ear infections at 18 months so I had her hearing tested and she had a hearing loss so we contributed that to the lack of speech.  We started therapy- PT, OT, and speech.  We gave Kaila a hearing aid and put her in a hearing impaired school.  Things still didn't improve so I kept investigating.

Kaila was evaluated for Autism and in November of 2003 Kaila was diagnosed.  That was a very difficult diagnosis but there was hope.  We moved Kaila to a school with a Applied behavior analysis curriculm.  Kaila then switched pediatricians and that was the first time we heard about Rett Syndrome.  I had explained to a doctor that she was continuuing to lose skills- and she wasn't able to walk down the stairs.  This concerned the doctor so we were referred to another pediatrician who also felt there was potential for RS.  Kaila was seen by a geneticist in July 2004 and we were told that the results would be back in October.  I received a call the first week of August and we went in to receive our results.  On August 6, 2004 we received the diagnosis of Rett Syndrome.  Our lives were changed forever.

Kaila loves to swim, still loves the outdoors, and she is happy most of the time.  Kaila has beautiful curly hair and she has pretty blue eyes.  The newest excitement in our life is Kaila gets to meet The Wiggles very soon and she is getting her first Convaid Cruiser!

Written by Kaila's mom Shirley in August 2005