Introducing You, Me and MD: Meet Columnist Leah Leilani

Leah Leilani

Hello! My name is Leah, and 12 years ago, I was diagnosed with a rare form of muscular dystrophy called mitochondrial myopathy. If you don’t know, mitochondria are the energy machines of the cell. They transform your food into energy so you can live. When your cells aren’t working, your body isn’t working. For me, it means all my vital organs are affected in some way.

Getting through the day without my wheelchair and without taking naps is not possible. I spend most of my days living in an anaerobic state; the way you’d feel if you just finished a marathon. So simple things like taking a math test or painting my nails can wear me out for the rest of the day. I used to wear mascara, but I soon discovered that the weight of it on my lashes increased my exhaustion, so I no longer wear it.

I’ve always been a doer and an extrovert (ironically), so for me to have to lay around for days at a time is not easy, and sometimes I put up a fight before giving in – which doesn’t help. It’s hard to know that your friends are off at Harry Potter World having a blast and you can’t go because of your illness. But I can still find ways to do things that make me happy.

As I grew up, I would have an occasional symptom of mito. When I was 10 months old, I suddenly stopped eating. After tests and physical therapy, my doctors realized that it was because I lacked muscle in my cheeks. I also experienced developmental delays with things like reading and math. Nothing really led us to believe that something was wrong until about the age of 7. My mom and I were walking to the car after school, and I remember her asking me if I was feeling okay. I replied, “Yes.” Years later, I would discover that it was because she noticed a change in my gait, and that started the many doctors’ appointments and tests to find a diagnosis.

My disability is not visible, meaning that you can’t tell there’s something physically wrong with me by looking at me. Because of this, people tend to assume that I’m faking my illness. During the time surrounding my diagnosis, the school system I was enrolled in refused to believe that such an illness was real. It decided instead to accuse my mom of child abuse. That left me with bouts of depression for years. But I like to refer to those days as a blessing in disguise, because how can we be thankful for the good if there isn’t any bad?

Soon after switching school districts I went to MDA camp for the first time. For every kid with muscular dystrophy, camp is a week of nirvana. It’s nonstop fun and laughter, and is no doubt the best week of the year. Not long after, I was offered an opportunity as national ambassador for MDA. I discussed it with my parents, as well as my doctors, and decided that the constant travel that was required wouldn’t be healthy, so we settled on regional ambassador. I was regional ambassador for about three years and enjoyed every minute of it. I was invited to appear on the Jerry Lewis Labor Day MDA Telethon not once, but twice, where I met celebrities like Tom “Shot Gun” Kelly, from radio station K-Earth 101, and Jackie Johnson from KCBS-TV news. I spoke at fundraisers and events such as galas on a regular basis.

I might not be able to do everything my friends can, like hold down a job or live on my own. But there are things I’ve gotten to experience that they may not get the chance to do in their lifetimes, such as fly in a helicopter. (It was auctioned off at an MDA fundraiser, and my mom got in a bidding war to win it for me). I know it sounds cliché, but I think of happiness as a choice. If I were to whine and complain, what good would it do? Every night, I lay in bed and I think about the blessings I noticed, and how grateful I am for them. My parents didn’t raise me to make the most out of life just so I could lay around on the couch watching TV forever. Now, granted, I do that a lot, but quality of life is important to me.

Not everyone is meant to have a world-changing purpose, I do believe that some of us are meant to just love and be loved. The trials in our lives are all stories that can help and inspire other people. Everyone is going through some kind of battle. I know that being positive can seem impossible at times, but life has a way of working itself out. And if you trust fate and surround yourself with love, then that happiness will come sooner than you’d expect.

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Note: Muscular Dystrophy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to muscular dystrophy.