I was born on August 9th, 1985 in Panguitch, Utah. Before I was even born my Mom knew something was not normal with me and told the doctors that I would have to be born c-section. I hadn�t kicked or moved much during the pregnancy like my older brothers had. The doctors were reluctant to do the procedure, but had no other choice when my Mom threatened to leave the hospital with her unborn child and find another hospital who would listen to her. I was born one month early because my Mom had toxemia and was going to die if I was not born right away. During the c-section the doctors found me stuck to my Mom�s pelvis and also flipped upside down. Because of this and because of my disease, we would have both died had I been born naturally.
I was very swollen and bruised when the doctors saw me and knew something wasn�t right with me. Aside from also being very short, I was in chronic pain. I also stopped breathing, and was resuscitated by a doctor. X-rays were taken of me and I had 12 healing fractures throughout my arms and legs. By some miracle, a doctor from up north was in this small town hospital the day of my birth and was able to diagnose me with Osteogenesis Imperfecta, commonly known as the brittle bone disease. I was then life-flighted to Primary Children�s Hospital in Salt Lake City, Utah. A skin biopsy was done and it was discovered that I had OI type IV, but grew into type III. Now I'm a cross over between type III and IV. A few days later I was brought home to be with the rest of my family. In Kanab, Utah. My Dad had accompanied me at Primary Children�s Hospital while Mom recuperated from the c-section in Panguitch.
Once I was home in Kanab, everyone in town learned of OI, and just how easily it was for me to break a bone. A simple cough or sneeze from someone in the room would startle me just enough to snap a femur. I lived the first few months of my life being carried around on a pillow. I was given a water bed type thing in a basket to later be moved around in. Instantly my family learned when I had a new fracture, I would hold my arm or leg very still when it was broken and cried a lot. Even though I was in much pain, I was loved by everyone and needless to say, spoiled rotten. Friends of the family brought me gifts and clothes, and one even wrote a poem about me. I was my Daddy�s little princess, my Mom�s angel, and my four older brother�s little sis.
~ Early Childhood ~
Around the time of my second birthday Mom and I began flying back east to the National Institute of Health, (NIH). This is a research center in Bethesda, Maryland that researches rare diseases and illnesses. They had a study on Osteogenesis Imperfecta and with a lot of begging, Mom was able to get me into the protocal. It was here we learned about rodding surgeries, (amung many other things). At about age two I had my first surgery. Children with OI often undergo rodding surgeries, inserting steal rods down the center of the long bones. These rods act as an internal splint to help heal and reduce frequent fractures and to hold the bone in place to heal correctly. These rods also help to keep the bone from bowing. In my case, my legs were shaped like boomerangs so the rods helped make them straight.
My first few surgeries were done on my legs. First the tibias, and then later the femurs. Growing up I confided a lot in my Mom. Through every break and surgery she was always there for me. My Dad never attended any surgeries in which we�ve never really understood why, and neither of my brothers have either. When I was little, the first person I would see after a surgery was Mom, holding my hand and watching over me. I spent a lot of my childhood in body casts recuperating from surgeries. My parents and brothers protected me from every possible accident or mis-hap but eventually, I had to find my own limits. Even though I had a fragile bones and used a wheelchair, I still attended regular school. I had a personal attendant assist me from preschool until my junior year of high school helping me with the bathroom and physical therapy and any other challenge that came my way. I couldn�t go out and play on the monkey bars or slide down the slide but I still had a lot of friends and was liked by all of my classmates.
I was full of determination as a child which gave me the ability to walk with leg braces for all of my grade school years. I remained mostly in my wheelchair but for an hour and a half every day I was on my feet taking small steps with my walker. This was a lot of work for me and I tripped and twisted my ankle on many occasions. I loved walking but by age 11 I just couldn�t do it any more. I was too weak, had gotten too overweight, and so walking slowly became impossible.
~Adolescence~
At age 11 my parents got a divorce. For a while my Mom kept our house in Kanab so my brothers and I could stay with her. My Dad remarried and moved to Glendale, Utah. A few months after the divorce Mom decided to move to Cedar City. She thought I�d have a better education there and more physical therapy because of the city swimming pool being indoors. Mom and I moved and Dad took our house back. Two of my brothers came with us to Cedar City for a short time. We lived in an apartment. My brothers living with us at the time, Lance and Clint ended up moving out. Matt was living on his own in Kanab and Kyle was living with my Dad who by now was living in Arizona. Mom and I found a house through the government subsidize housing authority and moved. I went to Canyon View High School for my freshman, sophomore, and half of my junior year.
During my freshman year of high school while taking a trip back to the NIH I had a very bad accident. Mom and I were in the airport in Atlanta, Georgia and she was pushing me in one of those manual wheelchairs. We were eating chicken and arguing about something when suddenly, I blinked and was staring directly at the floor. My first thought was, �wow this can�t be good!� I was in a state of shock for a minute, trying to figure out how I�d gotten on the floor face down and if anything was broken. Nothing seemed to hurt, so I tried moving my arms. I moved the right one first which seemed to be fine, then the left. Suddenly pain from every part of me shot through my body and I started crying. I then threw up. Mom made someone call for an ambulance at my request. Some lady got down on the floor in front of my face and began asking me millions of questions. I told her my left arm was broken, as well as my right hip. She asked if I could roll over and I said no because pain was present on both sides. Mom was hysterical and it seemed to take forever for the paramedics to arrive. They rolled me over onto the gurney and I felt like someone had torn off my arm and grinded my hip into bitty pieces. You can just imagine the huge crowd of passer byers I seemed to had gathered through all of this. I�m sure it was a site! A three foot tall person was screaming her head off from falling out of a wheelchair and clutching onto a chicken leg! I couldn�t let go of the chicken because it was in my broken arm. Mom had to pry it out of my fingers. I was taken by ambulance to a trauma center. No one in the trauma center knew what OI was or how to care for me. Several x-rays were taken of me and the fallowing day I was life flighted to Salt Lake City, Utah to see my orthopedic surgeon. We discovered my rod had bent in my humorous bone, and my arm had a compound fracture that hadn�t quite broke the skin. My hip was cracked and I had several broken ribs. I went through surgery the next day to fix the arm and spent days in the hospital. Lamont, My Mom�s ex-boyfriend who remained our dear friend and is still our dear friend today came to the rescue of bringing us home since we had no car. I had to lay in the middle of the car on the floor and be removed through the back doors because I couldn�t bend my hip. I spent quite a few weeks living on the living room floor. I recovered though, and haven�t been in one of those wheelchairs in the airport since. The cause of me falling out of the wheelchair was due to those metal plates in the floor of the airport that protect the wiring. The front wheels of the wheelchair caught on that and flipped the chair. I wasn�t holding on because I was eating and not thinking. Our joke for a long time was that Mom dumped me out and that I didn�t want anyone stealing my chicken. In fact, that year in my yearbook some guy wrote, �If you happen to fall again, next time please just let go of the chicken!�
There became a lot of drama in my life between my friends and I during my junior year at Canyon View High School. In addition to that, our house had toxic mold in the bathroom. This was a very hard time for me because the mold was making my Mom and I very sick. Because of the black mold in our house, I had developed a severe case of Asthma. I was on oxygen at night and had become weak and sleepy all the time. I felt dizzy and disoriented in the night, and it was hard on Mom too. Our dog we had slept pretty much all day so we started making her spend much of the day outside in the fresh air. Mom and I had previously had problems with green mold growing in our crawlspace before due to poor insolation. They had to put vents on every side of our house so air could get in to the crawlspace and circulate. We also had better insolation put in. This time it was black mold and in our bathroom. It was growing in the walls behind the shower tiles, under the floor tiles in the shower, and under the linoleum. One day Mom somewhat lost it and tore up all of the linoleum because the housing authority didn�t believe we had a mold problem. Making the mold toxins airborne only worsened things. The house we currently live in now in St. George hadn�t been fully built yet, so we ended up living in a really dumpy apartment in Cedar City till we waited for our home here to be completed. Miraculous, while living in the sleazy apartment my oxygen levels increased. I was able to get rid of the oxygen and my asthma symptoms started to diminish, (and are now gone completely).
All of my brothers lived in the St. George area, which is why Mom and I chose to live here. We had a choice, to stay in the apartment we were temporarily residing and waiting for the bathroom in our moldy home to be rebuilt or to move to St. George and live in a brand new low-income house. We decided the brand new house sounded great, and told them we would take it without even knowing what it looked like. (Our house may be low-income but anyone that comes here never guesses it! They�re town homes so each is connected together but individually separated. I�ll put up a picture as soon as I have time.) Moving here, the only thing I had to loose was my dog, Angel. She was part hound and part chow. A lot of the friends I had I was glad to leave behind and my true friends I still talk to and see on a daily basis!
I finished my junior and senior year at Pine View High School in Washington City. Washington and St. George are connected together, so you could pretty much say I live in St. George. The only difference is the zip code. Graduation was amazing! I received the Principals award and had a standing ovation. I also went to the graduation party put on by the school and won a very beautiful necklace and twenty dollars. I broke my jaw during my senior year and had to have it wired shut. The cause of the break was pressure on my jawbone from a wisdom tooth. They never removed the tooth but if it breaks again they are going to pull it out. It probably wouldn�t have broke but I was grinding my teeth together as hard as I could because my jaw had popped funny. I would have to say that falling out of the wheelchair and breaking my jawbone were the two most crazies fractures I�ve encountered so far. I�m sure there will be more yet to come.
~ The Present ~
In August of 2003 I turned 18 years old and decided it was time for me to venture out on my own into the world. I moved by the college into a student housing apartment with one of my closest friends. There was just us three girls sharing the unit. My friend Wendy, a girl named Marsha from Las Vegas, and myself. Living in an apartment was a very big challenge for me. I had to do everything by myself because I didn�t know Marsha very well at first and Wendy was never home. The biggest challenge I had was plugging my wheelchair in at night. The charger unit is on the side of my chair towards the back so I cannot reach it while sitting in it and cannot reach it from my bed. I learned to pull up to my bed right up against my night stand and crawl onto my bed and then onto the night stand to plug in my chair. The night stand was on wheels and I was scared each time I did this that the table would move too far for me to get back onto my bed or my chair. I finally started asking Marsha to plug it in for me. Wendy and I drifted apart. We had become two completely opposite people so I became very close to Marsha. She would take me in the wheelchair accessible van that�s my Mom�s and we would go to the movies, or out for dinner with her friends. Unfortunately I had to move home two weeks before the semester ended because of the troubles I was having with my arm.
Toward the middle of November I cracked my left arm in the radius below my elbow. There is no rod in this portion of my arm at the cause of the crack is yet to be known. I went to the emergency room and had it splinted. Two and a half weeks later I broke my arm completely in the same location, and also broke the ulna bone. I seen an Orthopedic surgeon named Dr. Delcore from Cedar City, Utah who has been taking care of me since I was 14. He said to fix the fore-arm from continuously breaking the two bones would have to be fused together, which didn�t sound like something I wanted to do and something he would only do if he had to. He told me my arm would eventually find it�s healing spot and heal. I figure, if nothing caused it to break in the first place, wouldn�t it just do it again? I told him that my humorous on that same arm had been hurting when I bend my arm. The x-rays show that the rod has come out of the cortex of the bone above the elbow. He said he couldn�t remove the rod without breaking it and that basically he wasn�t willing to do that. I told him I couldn�t move my fingers and that my hand would swell if my arm was bent. He basically said that this was expected with �people with my condition� and sent me downstairs to the physical therapy place to have a splint put on. The splint was hurting my arm worse after being on for a while because it didn�t have the tight pressure that the ace wraps had. I had an ace wrapped half-cast splint thing made from the ER. While getting the splint made the therapist gasped at me when I jumped back when he rubbed the top of my arm. He told me he just felt the tip of my rod. I told him not to worry that it apparently wasn�t out very bad even though my arm is asleep all the time and my fingers were swollen. I was just relieved I wasn�t the only one who had felt the tip of my rod through my skin. I ended up putting the ace wrap splint on and leaving vowing never to go see Dr. Delcore again.
As of the end of December my arm is slowly healing. I removed the hard part of the splint and it is now just ace wrapped from the wrist up. I exercise it in the water every few days to keep the swelling down and basically refrain from bending my elbow. With the ace wraps on I am able to flex my wrist and move my fingers. The ring and middle finger struggle to come up but they are improving. I can do little to nothing without the ace wraps on, it�s like my fingers and wrist died. I am hoping by next week I can start going some of the day without my ace wrap and begin some out of the water therapy with it. There aren�t many Orthopedic surgeons in this area that know about OI but we are working to find one.