Back to Stories
Katie’s Story
"My name is Katelyn Marie I was born November 6th, 2003..."
I have a big brother named Micheal and he is the most awesome brother ever. He helps my mom care for me and doesn't mind a bit! He reads to me, plays with me, and can make me laugh when no one else can! I love Mickey Mouse, sports, and getting my hair done with my mom.
I was born with Congenital CMV. It is a sneaky little virus. Because of the cCMV I have Severe Brain Abnormalities, Brain Calcifications, Spastic quadriplegia (more commonly referred to as cerebral palsy), Epilepsy, Severe/Profound Hearing loss in my right ear, Moderate/Severe Hearing loss in my left ear, possible Cortical Audio Impairment (CAI), Peripheral Scaring on my left eye caused by the cCMV, Intermediate Estropia, Cortical Visual Impairment (CVI) this makes it hard for me to us my vision and fine motor skills at the same time, Severe Reflux, I used to be aspirate and have a delayed swallow reflex but with oral training over the years I am doing much better, and Severe Developmental Delays.
I use a hearing aid on my left ear and a cochlear implant on the right, glasses, wheelchair, Botox injections to my upper extremities and thumbs, and AFOs. In March 2006, I received a G-Tube along with a Nissen Fundoplication surgery to help with my reflux and resolve my "failure to thrive" diagnosis. It has worked wonders; I was 14 lbs in March 2006 and falling way below the growth chart. I am now a tall thin girl hanging out in the 10th percentile for weight! I received hip surgery on January 5th, 2009 (Bilateral Hip Adductor Tenotomy and Bilateral Varus Derotational Asteotomy), with less than desirable results so I used a S.W.A.S.H. brace to keep my hips, pelvis, and lower back in line until the inevitable 2nd surgery. My 2nd hip surgery was November 29th, 2010 and this time it was only the left side and I was in a purple one legged Spica cast for 8 weeks. We stayed optimistic about this surgery and my mom was scared for me, but I have recovered wonderfully. I still can not sit like I could prior to the 1st surgery and still scissor a bit, but I have more range of motion and try to walk with upper body support now. I like to do 2 steps with my left leg for every 1 with my right and currently I'm being evaluated for a Prime Engineering Kidwalk by my school PT and hope to have it by December this year if all goes well.
I started preschool at the Cooperative Preschool for Dual Sensory Impairments and Multiple Disabilities located at the Arizona Foundation for Blind Children (FBC) in November 2006 and THRIVED THERE! My mom and teachers were extremely pleased with my progress! I went through transition at the end of the school year and my entire team and my home school district agreed that staying at FBC would be best for me and I am now a 1st Grader in their Primary Education Program (PEP). This school year I have new teachers and a partially new team behind me, we are all working well together to reach my goals. I love school and I'm a "social butterfly", that's what they say in all my reports anyway! There is so much I want to do, I just need to figure out how to do it in this body that I can not necessarily control. BUT YOU JUST WAIT; YOU ARE GOING TO BE AMAZED AT WHAT I WILL BE ABLE TO DO!
I won't let CMV get me down, I'm a beautiful girl with a pretty smile, and I have an AWESOME PERSONALITY and a contagious laugh! Everyone who meets me falls in love with me! I am a strong, happy, and determined girl!
- Shared by her mother, Heather