I was born on January 7th, 1999, at 11:58 at night just two minutes before midnight. At 11:59 my little twin sister was born ONE minute before midnight! I have a twin sister, but I call her my little sister because I am older by one minute. If I was born at 11:59 and she was born at midnight we would have been twins with separate birthdays, imagine that! Obviously, we are fraternal twins because I’m a boy and she’s a girl.
Months go by and luckily for my mom having twins she was able to catch on quickly that something was wrong with her son because my twin sister was able to do things that I couldn’t. My twin sister was able to walk while I was still crawling everywhere time went by and my mom just knew something was wrong. My mom made an appointment with my paediatrician and told my doctor how I was still crawling, and I couldn’t hold my balance when my mom would try to stand me up (so I could learn). My paediatrician just said “oh. he’ll grow out of it.
He just needs a little more time.” My mother took me home; time had gone by, and I was still in the same situation. My mother made another appointment and insisted for my doctor start running tests because something was wrong. At two and a half years old, my mother’s life had changed. I’m not a parent yet, but I’m sure just like any other parent we hope for our kids to be healthy and in good health.
My doctor did a muscle biopsy and that’s when my mother found out that her son had a rare disease known as Spinal Muscular Atrophy Type Two. This is the day my mother’s life completely changed because she now had to take on the responsibility to care for her child that’ll never be able to become dependent and offend for himself. Now for those of you who aren’t familiar with SMA, I’m sure the majority of you don’t know what this disease is. here it is.
What is SMA? Spinal muscular atrophy (SMA) is a disease that robs people of physical strength by affecting the motor nerve cells in the spinal cord, taking away the ability to walk, eat, or breathe. Is there more than one type of SMA? When SMA symptoms are present at birth or by the age of 6 months, the disease is called SMA type 1 (also called infantile onset or Werdnig-Hoffmann disease). Babies typically have generalized muscle weakness, a weak cry, and breathing distress.
They often have difficulty swallowing and sucking and don't reach the developmental milestone of being able to sit up unassisted. These babies have an increased risk of aspiration and failure to thrive. When SMA has its onset between the ages of 3 and 15 months and before the child can stand or walk independently, it is called SMA type 2, intermediate SMA or Dubowitz disease. Muscle weakness is predominantly proximal (close to the centre of the body) and involves the lower limbs more than the upper limbs.
Usually, the face and the eye muscles are unaffected. Late-onset SMA (also known as SMA types 3 and 4, mild SMA, adult-onset SMA and Kugelberg-Welander disease) results in variable levels of weakness. SMA type 3 Symptoms usually appear between the ages of 18 months and adulthood. Affected individuals achieve independent mobility. However, proximal weakness in these patients might cause falls and difficulty with climbing stairs. Over time, many lose their ability to stand and walk so instead use a wheelchair to move around.
Most of these patients develop foot deformities, scoliosis, and respiratory muscle weakness. SMA type 4 is late-onset and the age of onset is not defined but is usually after age 30. Type 4 is a mild form of SMA and therefore lifespan remains normal. Patients are able to achieve motor milestones and maintain their mobility throughout life.
I and my twin sister attended preschool together and I never really felt different from the other kids. While the kids were taking their naps I would go and play with the toys entertaining myself for those thirty minutes to an hour. I went to an ordinary school where I was their only disabled student, so it was all a teaching and learning experience for everyone. I remember my mom teaching this woman at the school how to take me to the restroom (I can’t remember if she was a teacher or what exactly was her position and title at the school), but her name was Mrs Reyes.
At first, it was uncomfortable and awkward, but M.rs Reyes had a disabled son herself, so she was familiar with how to take care of someone who lived with a disability. For a while during recess, I really didn’t and couldn’t do much because there was either sand or swings that I just couldn’t do so what the school ended up doing was purchasing my very own special swing. The man was it fun! I and my twin sister graduated from preschool putting and wearing our cap and gown. Mine was blue for boys and hers was red for girls. we took pictures and were granted to move up going into kindergarten, haha.
It was in the middle of my third-grade year that we got the call I had gotten approved to transfer schools! I was attending Orange Center Elementary School and was able to transfer to Story Elementary School where they had kids who also were in wheelchairs and had other disabilities making me feel not left out anymore. I was really nervous because it would mean me, and my twin sister would have to separate from going to different schools, so my mom told me. “Son, if you really want to go, I’ll buy you a cell phone for you to call me if you need anything.”
To make myself feel more comfortable and at ease during the transfer. She had to convince me to go. I was super nervous and remember my stomach hurting because I was scared, but I had said yes and was now at a new school. The teachers showed me around and I felt so much more comfortable because this school was familiar with how to help us and what we need help with. Their accommodations were amazing, and I loved it! I attended fourth grade this year here and had gotten my own special desk that was customized for me and my wheelchair. Shortly after I was in training to learn how to use a power/ mobilized wheelchair because pushing myself around was becoming harder for me. I had to go through training where they had a power wheelchair at another school (I forgot the name of this elementary school), and I had to take the training there.
At first, when I started training to drive a powered wheelchair it was after school so it was quiet, and no one would be around. so, I wouldn’t hurt anybody running over their toes. I would drive this wheelchair around to get the feel and adjust to what it is like. I remember the first time I drove myself onto the grass in the back of the school and it felt amazing. It was the most amazing thing to me that I was able to do because I was able to go on the grass myself without anyone having to push me. It was scary at first because I wasn’t used to the wheelchair going over little hills and holes in the ground when I would drive over them. I felt like I was going to tip over, but of course, I didn’t. It just was all new to me.
A few weeks go by and after me driving this powered wheelchair my physical therapist Amy then tells me. “Are you ready to drive around with students being around?” I was scared because I didn’t want to hurt anybody. The bell rings. and it was like we just poked into a hornet’s nest because so many people came from every direction coming out of their classrooms. I broke down crying fearing I would run someone over. My mom cleaned up my face because I was full of tears and had a runny nose from crying. I started driving down the halls ridiculously slow and passed!
Now it was time for me to get measured so I can get my very own powered wheelchair accustomed to me. It took about six months or so with the process of my insurance having to approve it and then having it made. I came home from school and BAM! She was parked in my living room waiting for me to sit on her precious new seat cushion turning it on (the wheelchair I am talking about, hahaha). Mom sat me in it. I turned it on, asked mom to open the door and proceeded to go outside. I went up and down our sidewalk, and driveway, and then tested her off-road capabilities! Who knew after this my life would then change giving me the freedom, I never thought I’d ever have? I took it to school and these two guys named Sammy and James rolled up on me with their powered wheelchairs and asked. “what’s up, wanna race?” HECK YEAH, I WANNA RACE! Let’s run it! All three of us lined up and raced around the school's playground where they had a walkway/ trail that went around it. Having a powered wheelchair gave me a lot more freedom and lifted some of my life’s limitations.
My cousin Danny had just graduated high school and we became pretty close. My mom had asked him if he would like to become my caregiver. Before we finalized it, he practised showering me, dressing me, and with other daily living things. A few weeks later he had now become my caregiver. His mom and my mom are very close. My mom and my godmother (Danny’s mom) owned two houses right next door to each other. My mom owned a smaller house than my godmother. Because I was in a wheelchair my godmother and my mom had swapped houses so I could be in the bigger home having more room with me and my wheelchair.
So, my cousin Danny lived right next door to us which was super convenient. Danny's mom would tease him saying “I am his boss” which was technically true, and I would get a kick out of it laughing because I was his boss, and he was much older than me. I had a lot to learn because my being his boss being much younger than him got to my head. We started to argue and fight (not physically of course) and what once started to be fun and cool started to fall apart with our relationship. I and Danny had a lot of ups and downs during the years of his working for/ with me. At the end of the day, he isn’t my cousin. we consider each other more as brothers because of how close we have gotten.
I get home and my home is checking me out looking at my head. At this point, I started having a lot of pain in my back from being jerked and falling and with my head from hitting the concrete. Light, sound, and even bumps/ little cracks on the floor would give me a huge headache. I had to keep myself driving around in my wheelchair though because when I would stop and sit still it would hurt more because my mind was focused on the pain so driving around the house was my distraction that would ease the pain a little.
My mom and my cousin started hooking me up onto the Hoyer lift putting me inside carefully as possible. I get inside the truck, they load up my wheelchair in the back bed of the truck, they get in and we head straight to Valley Children’s Hospital. I went to the emergency room and the pain was getting worse in my head. They asked me what had happened, and I told them. Because my head was in so much pain, they immediately took me to the back, and I talked with the doctor letting him know what happened and why I’m there.
I was super tired and kept trying to fall asleep, but I had to stay awake until they knew what was wrong and if I had any severe damage. He ordered a CT scan and an x-ray of my spine. My results came back with me having a concussion. They bandaged my head and I get discharged to go back home. For weeks I was sensitive to light and sound. The littlest sound would trigger my head to hurt. I was back on home studies for half of my eighth-grade year because I also had tweaked my back.
At the end of my eighth-grade year my mom, aunt Della, godmother, and my aunt Felicia put their money together buying me my first-ever handicapped van! Come outside my mom tells me. I saw the van and started balling my eyes out, overwhelmed with happiness and feeling thankful to see what I was seeing. WOOHOO!... more freedom! They knew how much I loved my LED lights and found a van that had all the bells and whistles. It was a high top, silver, chrome rims, LED lights that changed colours having different light modes, a flat-screen TV, a nice stereo system, an outlet to plug in my game system for when we travel, and back seats that laid down in case I had to use the restroom whenever we were on the road!
This van was a regular van and they converted it into a handicapped van installing a wheelchair lift in it and taking out the middle seats. This van was beautiful! I call it “my pimpmobile.” I never was able to go out anywhere. The only place I would go out to be the doctors and occasionally to the movies using the Fax bus because riding in the truck was hard to get me in and out. The first place we drove to was my aunt Della’s house showing her and my cousin Tya. We then went out to eat afterwards. This van meant a lot to me because it gave me a more meaningful life. For the longest, I never had been inside a store, gone grocery shopping, been to the mall, or travelled out of town since I had my back surgeries. “I’ve been very lucky in my life, but also very challenged.” This van gave me life!
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