“My name is Nila Morton. I am 20 year old young lady that has a rare form of Muscular Dystrophy called Ullrich. I’m the only one in South Carolina to have it and at the time of my diagnosis I was number #96 in the world to have it. My disease affects the movement of my muscles so I have to use a wheelchair but I can walk with assistance using as my walker or someone helping me. It also affects the respiratory muscles causing me to have low lung function. I have to use a BiPAP at night to help my lungs so I can wake up to a beautiful tomorrow.
I don’t allow my disability to define me. I’m known to be a young lady who is brave, strong, and an inspiration. I accomplished so much in life such as being the first young lady with a disability to complete in the Miss SC Teen USA pageant. I also speak at different events to spread knowledge about people with disabilities and help give us the respect we need. I am a role model and am currently going to college to pursue my education in Psychology so I can help more people with disabilities. I want them to be able to not stop them from living life. The journey wasn’t easy because I went through sickness, bullying, and even low self-esteem to get to right where I am now.
When I was baby I was considered normal but I was born with dislocated hips. After being in a brace for two months I became just a regular baby who cried all day and night. It wasn’t until I was five years old when I started to slow down and my mom noticed an issue. She took me to my doctor but all they told her was, ‘It’s just muscle weakness and that’s it,’ but she knew it was more than that. As each year passed I would become weaker. I went from wearing braces on my feet to a walker, a manual wheelchair, and finally to a power wheelchair. My mom would search through the internet and bring me to different hospitals trying to find out what I had. It took my mom and I going all the way to Philadelphia to find out about something called ‘Ullrich’ when I was in the fifth grade. It was a blessing because I wasn’t going to be known as the girl with an unknown diagnosis but also it was a curse because I had to go back home to South Carolina and explain to my doctors what kind of MS Ullrich even was. Every time I would get sick it was new experiment for both me and the doctors. I would learn which part of my body Ullrich would affect each time I went. Because I have a low lung function having a cold wasn’t an option for me because it would turn into pneumonia quickly if I didn’t catch it on time. The hospital started to be like a second home to me.
The sickness wasn’t the biggest challenge, the bullying was. It started when I went to middle school and that’s when students began to notice people for how they look. I was a weird freak to them since I was in a wheelchair going to my ‘regular’ classes. I say ‘regular’ because most students with disabilities typically go to a different classroom.(a conversation for another time!) Students weren’t open to getting to know me and be my friend. They would pick on me and call me names such as ugly, fat, weird, and crippled. I had to take gym as a requirement and one boy said, ‘Why is she even in here? She’s f—king crippled!’ I usually ignored it but as days went by it would get worse and start getting next to me. One day someone came to talk to me at lunch and I thought, ‘Finally someone wants to be my friend!’ Instead they asked me about my disability and right when I was going to explain they cut me off by saying, ‘If I was you I would kill myself because I couldn’t live like that.’ At that moment I felt hurt and it broke me that people thought my disability seemed so bad I needed to be dead. I wanted to die and I wanted my disease to just give up on me because I couldn’t live another day of being bullied. The next morning my mom and I got into a huge argument over something stupid and I yelled out, ‘I wish I was dead! I’m tired of this sickness and being bullied!’ And my mom stopped and looked at me in shock. That’s when my bus came and I went ahead on the bus. While I was at school my mom came to pick me up and she cried in the car telling me how hurt she was that I said what I did. That’s when I told her about what was going on at school. I went to counseling because I needed to open up and express how I was feeling. It helped me become stronger, learn myself, and love myself and my disability. Now I’m unstoppable!
I was finally in high school and happy because I made friends and felt comfortable. My sophomore year I got very ill. I had pneumonia and I had to stay in the hospital for almost two weeks. I got very fatigued, couldn’t walk, lost so much weight (I was 90 lbs), didn’t eat because I lost my appetite, and my lungs weren’t strong. The first couple of days were very rough because I had a hard time breathing and I still didn’t eat. One night I stopped breathing in my sleep and the nurses had to work on me to help start back up again. The doctors began to give up on me and they told my mom to get ready to call my family because I wasn’t going to make it. My mom said, ‘No! In the name of Jesus, my daughter shall live and not die!’ The doctors kept trying to tell her she was in denial and to accept the fact I was going to die but my mom didn’t take that as an answer. When everything was calm I asked my mom if I was going to die because I was scared and I wasn’t ready to go back to sleep. She told me I wasn’t and just to rest. She prayed over me that night. I don’t know what she said in prayer but God heard her and he came through. The next morning I felt a little better. I had a little hope but what really gave me hope was watching my favorite show ‘Say Yes to the Dress’. I watched with my mom and they was saying new episodes will be on next week so I told myself Nila, you need to make it so you can watch these new episodes. This is your little bit of hope to hang on to. Luckily with the Lord, my mom, and Say Yes to the Dress I was able to leave the hospital two days later! The doctors were shocked and couldn’t understand how I got better but they just realize know how God can work! Late in the midnight hour he can turn around and work in your favor!
Even though I was better my lungs weren’t strong enough for me to go back to public school because of all the germs. I had to switch to online schooling. I hated it at first because I missed my friends and I wanted to feel like a normal teenage girl I had worked so hard to be. At that moment I had to realize it was about my actual life. I did lose my friends and I was alone but I was able to get more involved in my community, doing a pageant, and being a voice for the disabled. I got accepted into college which help me continue living my best life.
Last year around October I got a new diagnosis regarding my lungs and had to incorporate a sleeping machine. It did make me sad because I thought I was getting better but then I realized I can’t allow any obstacles to stop me from finding my purpose in life. I want to be a successful model, author, psychologist, and the many other goals I have for myself and I won’t allow my disability to stop me. No matter what it brings.
I been through a ton but it all helped me learn a lot about myself and life. My disability/disease doesn’t define who I am and I don’t regret my disability because it makes me unique and special. It helps me stand out from the crowd and actually appreciate life a little more. My journey to where I’m at wasn’t easy and I may go on more tough journeys because that’s life! With my faith in God and my positive mindset…nothing can stop me because everyday I roll and slay!!!”
This story was submitted to Love What Matters by Nila Morton of Greenville, SC. You can follow her on Instagram here. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here, and subscribe to our best stories in our free newsletter here.
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