DAILY LIVING & MOBILITY

My Pretty Wheelchair Life with Muscular Dystrophy

Muscular Dystrophy

Janiqua Williams

My Muscular Dystrophy Testimony

Hello Everyone. My name is Janiqua Williams (sitting.pretty.__) and I am a 25-year-old young lady living with Muscular Dystrophy. A lot of you are wondering what is Muscular Dystrophy. It is a genetic muscle disease that causes progressive weakness in the bones and some people that live with MD will lose the ability to walk and will hardly breathe on their own. Those are the few symptoms of MD. I wasn’t always in a wheelchair and on a breathing ventilator. My mom always tells me the story of when I was a baby. I was like any normal newborn baby, except I was very tiny and my legs were floppy. I had to wear a cast on my hips and legs to keep them together. It hurt her to see her baby girl that way. She told me that she knew In her heart something wasn’t right. People don’t know that you can’t detect Muscular Dystrophy as a newborn baby. When I was 6 years old, the doctors told my parents that I had a muscle= disease.

Near Death Experience

Some parents could not deal with their child having a condition, but my parents never left my side. My mom & dad made sure I went to my check-ups and received the proper therapy I needed to keep my bones strong. It’s crazy because I still have memories of when I used to be able to walk as a little girl. I knew I was somewhat different because I couldn’t keep up with other kids. Muscular Dystrophy causes me to get tired really fast. My legs used to weaken so much I would have to take breaks when walking. My MD never stopped me from doing anything. I was a very fun and energetic kid. Even now today I still have that humble spirit. One of the symptoms of living with MD will be eventually you will have to get a wheelchair. As a kid, you think your fine and you can do without but my parents, therapist, and the doctor knew it was coming. As I started getting older (10 years old), I was still walking but I just had my wheelchair to get me around more, because as time passed the harder it was for my body to keep up. It was this one moment in my life back in 2005 when I was 11 years old. I caught pneumonia really bad. By me having MD, my immune system wasn’t strong enough to fight back. The only memory I really had is that I was really sick. My mom and grandmother took care of me. I was going back & Forth to Jackson, Mississippi but they could never figure out what was wrong with me. Now I remind you that I was just a kid. I didn't know I was so sick, but I felt like I was dying. A few months passed, and one night my family rushed my to Delta Regional Hospital because they noticed something was wrong and I was getting worst. To make the long story shorter, I had respiratory failure. All my family and friends of the family all said that I died and came back. Even my dad told me one time “Nika, we had lost you for a minute.” I never said this to anyone but I almost have a memory. This picture where I saw all of my family crying in this room and hugging me. It’s like I was there but I was watching over my own body and just saw everybody. I just remember this light of hope that everything was gone be alright if I lived or didn’t make it. All I know is I slipped into a coma and everybody was just waiting for me to wake up. That night they raced me to Memphis, TN where I was admitted to Le’Bonheur Children Hospital. Some probably think I wasn’t going to wake up, but I did. I know I would have because I have a strong loving praying family. As time passed the doctors were trying to stabilize my breathing. I remember bad nights where I completely lost my breath and the nurses and doctors would have to call cold blue. The doctors tried breathing treatments and even an oxygen mask but none of it worked, until one day I went into surgery and a had a trach inserted. It’s a little tube they put in my airway to help me breathe. I had no other option because my lungs were failing me. So that is why I’m on a breathing machine today. By all that happening to me as a young kid, it made my bones even weaker to ever be able to walk again.

Loving Myself: beauty comes from the inside out

I’ve been on a ventilator since my pneumonia hospitalization. Sometimes I have bad days, but the good days always outweigh the bad. When I was a kid, I didn’t understand why my life was that way and why things had to happen to me. I feel like these things occurred with me to be a living testimony. God wanted me to live and show you all that there are such things as miracles. God made me perfectly fine and I love myself so much. My mama always taught me to love myself no matter what. Never let anybody steal my joy and I haven’t let anybody on this earth do that. I just want to let my family know you are my strength and what keeps me going in life. I’m just thankful and honored to be here and share my story because I want you to all know there is already sunlight at the end of the road. Yes, I have Muscular Dystrophy and I embrace it and all my flaws; my little fingers, legs, wheelchair, and breathing machine. I still keep my head held HIGH. I’ve grown into a little woman and have found the strength, happiness, and confidence. I’m not perfect but I’m worth it and so much more. Now as I end this, I just want to tell all the young girls and women out there to please love yourself. I know it’s hard sometimes, but beauty is in the struggle. It is important to stay positive in life. Always know if no one is there, God is. Be who you are and be great. Love the skin you’re in because beauty comes from the inside out.  

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