Melissa’s story updated:
They say things happen for a reason, and I certainly believe that, as great things have happened many times in my life.
I am the youngest of 5 children.
When I was born on October 22nd, 1989 the doctors knew something was different. I was called a “lazy baby” because I didn’t hardly cry, and I was extremely floppy.
At 3 months my mother noticed I had a wheeze. She decided that if it didn’t go away soon she would take me into the hospital. Shortly after, she recalls watching me on the end of the couch and actually witnessing pneumonia set in as my shallow breathing became more laboured. She rushed me to the hospital and shortly after they performed a muscle biopsy.
It was a long 3 months later when I was diagnosed with Myotubular Myopathy at 6 months old. The doctors told my mom and dad to “not get attached”, which infuriated them. They said I wouldn’t live past 2 years of age, then 4, then 6, then 8, then 10, until finally, my neurologist said to me “Melissa, you are going to live longer than I am”.
Growing up wasn’t easy. Many hospital visits, doctors, needles, heartbreak. However I wouldn’t have it any other way if given the choice. All those things have made me into a better, stronger woman.
As a baby, I was always within arms reach of my Mom, or being carried all the time. When I was a toddler, I was walking in a walker, and when I outgrew my walker, my Mom requested a standing frame, to which one of my doctors refused. By the time I finally got one it was too little, too late. My legs couldn’t hold my weight, and I would scream when they put me in it.
When I was 4 years old, I got my first powerchair. It gave me new freedom and a little independance. Since then I have always been in a powerchair. I am now on my 4th one.
My legs do not straighten, due to the muscles atrophying from always sitting. I have severe scoliosis from my disease, which affects 50% of my skeletal muscles.
When I was younger, my neurologist had suggested that my disease came from my Mothers side of the family. He now believes I have X-Linked, the most severe type, and to his knowledge, I am the worlds first female. Also guessing by the About page on the website, where it says it only occurs in boys, I might be after all!
About 8 years ago, I had a blood sample taken that was sent to Boston, where they had an 80% chance of isolating the gene affected. The results came back non-conclusive. They told us to “come back when technology is more advanced”.
They do not know how I got it, but they know I was born with it. They suggested I may have started my own mutated gene because “all genes have to start somewhere”.
So I seem to baffle them!
With being very weak, I did not have much of an appetite, and eating was a chore. I was 13 years old and I weighed 36lbs. I was losing a lb. a year, then I lost a lb. in a month. When I was 14 I got a G-tube. The first few years there were complications, because I had no body fat to hold it in my stomach, so it kept coming out of my stomach but not my skin. They found a button that worked, they had only used it once before. With the new button I started my gradual weight gain and became healthier. Last time I was weighed, which was about 2-3 years ago, I was pushing the 100lbs. milestone!
During this time, the doctors were worried that my severe scoliosis would be my demise, with my back bending and twisting, they were worried that my major organs would be crushed. The orthopaedic surgeon said she did not want to perform the corrective surgery for my spine. We wanted a second opinion. The surgeon we saw next was adamant that I have it done, right away, because he said if I didn’t have it done, I would be dead in less than 2 years
My neurologist took my Mother aside and warned her not to go through with it, saying that the procedure was too invasive, and my body wouldn’t handle it. He also recalculated the surgeons success percentage into a startling reality. So we never had it done.
My doctors were amazed that shortly after, my back stopped bending and twisting, and all of my organs that were in danger had shifted out of harms way. I did wear a back brace for a few years but it became too uncomfortable.
Also when I was 14, I was put on a small amount of oxygen at night (0.5) because my carbon dioxide levels were too high, causing headaches and groggyness. I was on oxygen for a few years when they finally bumped me up to BiPAP at night, through a full face mask. I started sleeping like a rock through the whole night, as well as my Mom, who was previously getting up every half an hour to reposition me. We were both very sleep deprived so it was a fantastic change, albeit hard to get used to.
Now when I sleep I go into Delta sleep, which is the deepest sleep state within 5 minutes, and I stay there until I wake. My carbon dioxide levels are fine now, but kept a close eye on.
My mother also enjoys her sleep! 🙂
Melissa’s original story:
I am the youngest of 5. I have 3 older brothers and an older sister. My oldest is my brother Alex and growing up he was like my second Mom. He is 11 years older than me. Then my sister Rosine, who is 5 years older than me. I have always looked up to her, she is an amazing role model and I strive to be half the woman she is. Then there is my brother Will. He is a little mischievious, he is 3 years older than me. He is very kind hearted, and very wise. Then there is Jon, who is 2 years older than me. We used to fight alot when we were younger, but we are the closest. He is tall, dark and handsome, very quiet and serious but has a killer sense of humour when he is relaxed.
My Dad is a jack of all trades. Professionally he is a journeyman pipefitter, and also a skilled plumber. He works hard even to this day to provide us with what we need. He used to work away from home alot.
My Mom is an amazing woman. So strong and determined. She is the other half the woman I strive to be. She is a natural healer. Always wanting to care for people. She has been my caregiver my whole life. My fighter when I can’t fight alone. She is, without a doubt, my best friend.
I always liked the things my 2 brothers Will and Jon were interested in, cartoons, action movies, cars, superheroes. I also have a very deep love for Country Music, as did my sister, who “introduced” it to me at a very young age. My favourite singer is Terri Clark who is also Canadian. When I was little, I used to wear jeans, cowboy boots and a cowboy hat ALL the time.
I also like technology. I try to keep up with the latest gadgets. I love video games, it is another thing me and Will and Jon, (and Alex) shared together. Video games have been an invaluable tool for me. They have helped me with my muscles and reaction times, as well as kept me entertained during the long winter months, when I turn on “hermit mode”. I have always been a “Playstation Fangirl”. I have owned several of every Playstation console, as well as quite a few Nintendos!
I like Sci-fi and action movies, just like my Mom. My favourite movies are the ALIEN movies, and I actually have some neat stories relating to that! Like recently chatting and becoming friends with the majority of the actors from ALIENS, the 1986 blockbuster from James Cameron!
I love animals!, We’ve always been known for keeping a “zoo”. We have several horses, as well as cats and dogs. In the past we’ve owned many different animals like birds, lizards, rodents, goats, you name it, I’ve probably had it!
I attended regular public school. I attended playschool, and regular elementary/middle school as well as Junior High and Highschool. I was in a very small school for 9 years, from Kindergarten to grade 8 in my small community where I made lots of very close friends. We all went on to Junior, I made even more friends, but it proved to be a difficult transition.
My Mom always tried to prepare me, at a very young age for that day to come, when my friends would “move on”. It happened at the start of Grade 10. They got their licenses, went to parties, and moved away. They are almost acquaintances now. I tried to be ready like my Mom taught me, but it was still very hard, and a depressing time. Also with depression, my body began to become easily fatigued which made full days difficult. I started staying home more and more, and my Highschool was more interested in all the funding they received for having me there, than actually treating me with respect and giving me proper education and access.
I never did get full credits, but my childhood friends all wanted me to participate in the Graduation ceremony, because I decided I would quit school on the year I was supposed to graduate with my friends. The school board never let me take part in the afternoon ceremony, but I was allowed to take part in the evening ceremony and dance. I “graduated” in 2008.
I have been planning to get my GED online, but I have decided I want to have a few years of “fun” first, travel and such.
I am the only “child” at home now, I live with my Mom and Dad. I miss my brothers and sister every day and am so excited when they come home to visit.
I am also a very proud Auntie to a beautiful blonde haired and blue eyed boy, Tayler, who is totally healthy, with no signs of Myotubular Myopathy. He was born 2 months premature however, but you’d never know it today! I have a beautiful red headed niece, Georgia. She is my oldest brother Alex’s first child. Even though we don’t get to see her often she’s got everyone wrapped around her little fingers. She’s the prettiest little girl I’ve seen
In late 2011 I took part in an online course for disabled people to get job training and learn life skills through the Neil Squire Society. It was one of the best decisions I have made. I learned what I should have been taught in highschool, and I met a really cool friend who is also in a wheelchair, as well as some amazing instructors who I am proud and honoured to call friends.
I started teaching myself 3D modelling geared towards video game design. I am still just learning, however. I got my first official job through the program as well. I was a graphic artist for a local embroidery company that is located across the road in my small community. I worked from home.
I do things like design logos for clothing, design decals and signage, and all the little things that the owners think is “too techie!”
I also made and maintained a website for the local pony club for a number of years as well. I passed it on to my Mom in 2011, but still help out with it quite a bit, as she is just learning.
2012 was a BIG year for me. I did 2 charities back to back, as well as spearheaded a campaign for female gamers for a video game. The gaming campaign I gained support from over 4000 people, as well as the actors of the ALIENS film and ended up on all the major gaming websites and a few TV shows.
I have read all the family stories on your site, some sad, some exhilerating! What I got a laugh out of was all the cute baby pictures, they all look just like me!
I share remarkable similarities with all those affected, it is unbelievable!. It further solidifies that my diagnosis is correct.
Please read on below…