Denise's
History

Follow Denise's exciting travels to
China and her "Fight for Sight"!

<= Denise & her best friend Junior

My name is Denise and I was born in Denver, Colorado in June of 1998 at 38 weeks gestation after a delivery complicated by breech presentation and C-Section. I weighed 6 pounds 9 ounces and was jaundiced for a few weeks. When I was a month old, my parents noticed that I had movement back and forth of my eyes, which is called nystagmus and when I was about six months old I saw an Ophthalmologist and I was diagnosed with Optic Nerve Hypoplasia with no light perception. The doctor recommended that I have an MRI to see what else might be going on in my brain, but my daddy was in the marines and we moved a couple of times so it was difficult to get this accomplished when I was really young. I did receive some Early Childhood Intervention services, but it was pretty sporadic so I didn't learn too much.

In 2002, my daddy completed his service in the Marine Corp and we moved back to Denver. My grandparents (my daddy's mom and dad) helped us get into a house near them and we got all settled in. Unfortunately, my mom and dad couldn't get along any more so they separated and then got divorced. They worked out a schedule where I went back and forth for awhile so they could still take care of me. During this time my daddy also got my medical records transferred from North Carolina to Children's Hospital here in Denver.

When I was a little over four (4) years old, my auntie Debbie (my daddy's oldest sister) noticed that I had a very difficult time being around people or where there was a lot of noise. She noticed that I couldn’t really touch anything and that I was carried everywhere by my mom and dad because I couldn't walk. I was also really tiny and skinny for my age because I didn't eat any food and survived by drinking Pediasure from a baby bottle, I didn't talk but made noises that were not actually real words (my grandma Della said I was talking to my angels), I "gagged" at pretty much everything that had to do with touch, sound, smell and all those senses that you need on a day-to-day basis. I couldn't sit up real good and mostly I used to lay down with my face on the kitchen floor (near the refrigerator was the best place). Then grandma Della and auntie Debbie started helping babysit me more and more while my daddy was working.

Auntie Debbie decided to start trying to teach me how to eat food, how to sit up, how to touch things and what they are, how to say words, how to walk, and whatever else came along. She really had no knowledge about what to do, but just used her creativity and common sense to figure it out and she wasn't afraid to try things (even though I gagged at everything and didn't cooperate too much). She started by singing songs (the first one was the oldie but goodie "You're Making Me Dizzy") to me and noticed that I responded very well to this. Then auntie Debbie started teaching me how to eat, which was quite a task because I was so defensive about anything other than my bottle going into my mouth. But she persisted and very slowly, at a pace that was right for me, she would get me to take the tiniest of bites. She would begin by explaining what it was, singing about it, having me feel her eat it and then little by little she would get small bites into my mouth. I “gagged” every time, but eventually I started trusting auntie Debbie and as I became familiar with certain tastes, smells and textures in my mouth, I would try more and more. Here is the AMAZING thing about it. We worked on this process for about three years and then when I moved in with auntie Debbie and uncle Bob full time when I was seven (7) years old I came off the Pediasure completely and just ate solid foods. The types of foods that I ate were still very limited, but auntie made sure that we always had the food that I liked as she continued to introduce me to new foods. She also taught me how to use a spoon and drink from lots of different types of cups, but we are still working on how to use a fork. Now I will try just about anything and love all the new tastes.

I had a “gag reflex” whenever I touched anything too. EVERYTHING was a sensory overload for me. Auntie Debbie started helping me touch things by holding things one-by-one, explaining what it was, and then very carefully hand-over-hand helping me to touch it. Usually this process had to be repeated many, many, many times before I was willing to try touching anything on my own. I can now be around all kinds of noises and can touch many things, even though I still don't like to touch stuffed animals.

Since I didn't even stand up on my own, auntie Debbie started out by exercising my legs to try and strengthen them and then she would stand up behind me, bend over and hold my legs to make them "walk" so that I could understand what walking was all about and so that she could hold my body up because I didn't have the strength yet to do it myself. We did this for a really long time and the teachers at Anchor Center for the Blind were also extremely helpful with helping me build up my strength to stand on my own. Then when I was about six (6) years old I let go of the couch and took a few steps across the kitchen all by myself. Auntie Debbie would buy me lots of different types of shoes to try too and we finally found Stride Rites, which gave the right amount of ankle support to make it easier for me to learn to walk. Oh yeah, I also have flat feet so finding shoes with good arch support is also very important to my mobility. Auntie Debbie got me my first white cane and Pat Lewis, my mobility teacher has been providing me with the right size canes ever since. Now I am pretty good about using my cane and walking by myself, even though I am still very slow. Oh yeah, going up and down stairs are especially difficult for me because of the low muscle tone and the fact that I am just not that confident with my mobility on them yet. Auntie makes me do it by myself though, but she is always in front of me to make sure that if I stumble she is there to catch me

Auntie Debbie became my legal guardian and I have been living with her and uncle Bob since August of 2005, but I became auntie Debbie's "side kick" a few years before that. Because she was the one working with me on all the day-to-day things that I needed to learn, it only made sense that I live with her full-time. She says that she is the luckiest person in the world to have been given this opportunity to "hang out" with me every single day and see what life brings us. When I moved in she set me up a really cool room and started teaching my how to move around the house independently. She also set up all my therapy services, which includes speech therapy every Monday, physical therapy on Wednesday, occupational therapy on Thursday and she always sets up an additional way for me to build my strength like swimming lessons or gymnastics lessons or right now I am doing piano lessons (and I'm really good at it). Oh yeah, and we all have chores around the house. Did you know that vacuuming is a great way to help build strength in the hands, arms and legs? We also now have a full house with my cousins Dominic and Jenny, and my grandma and grandpa Blea living with us, plus our dogs Junior and Pepper. I love all the bustling activity now, which is something I couldn't be around just a few short years ago.

I also got really lucky and JoAnna Dean is my teacher in school. She is the "best" teacher in the world and in her class I have learned soooo much. I also now have some really good friends from school and from my adventures so far in this life.Be sure to check out my "Friends" page and more information about me on my "Pictures" page. Thanks for coming with me on my journey.