When I was 8 months old I began to get very sick. I have dangerously high fevers for no reason. I started having seizures. At one point doctors thought I had leukemia. As I got older things got worse. I couldn’t walk, barely talked and struggled with daily tasks. Doctors told me mother id die and if I didn’t id be a vegetable for the rest of my life. They told her to give up, I wouldn’t make it. Part of my mother was prepared for me to die and started saving money for funeral expenses, the other part of her was not ready to give up on me.
I ended up being diagnosed with Mitochondrial Disease. Mitochondria are the power house of the body. It provides all energy for the body. My mitochondria barely do anything. My body doesn’t break down food that I eat ultimately not providing energy to me. Mitochondrial diseases cause organ failure usually causing patients to die. Most don’t live to see their 8th birthday. I’m one of the lucky ones that have made it to age 20 and although everything is hard for me, my body has allowed me to live.
I walk up a flight of stairs and I feel like I’ve run a marathon. There are days I can’t even get out of bed. Sometimes I can’t hold a pen. My muscles are so weak that I live in constant pain. I get a common cold and I am sick for a month. Although I m still here today I still have a fear that someday I’ll never wake up.
When I got pregnant I was told I should have an abortion. Abortion is not something I believe in. doctors said if my body could barely keep me alive it was next to impossible for my body to grow a child. I didn’t have an abortion. A big part of this was because I was blessed with an amazing mother that never gave up n me. I wasn’t going to give up on my daughter. They warned me she might not make it. The day she was born she barely made it.
I was induced at 38 weeks due to a heart condition that my daughter had. Everything that could possible go wrong during labor, went wrong. When Jazlyn was born she was a “blue baby” due to lack of oxygen. At one point she didn’t have a heartbeat. When she was out I listened for what every mother does, a cry. I didn’t hear it. I watched the doctors’ work on her. I watched them resuscitate her. I thought the worst as I watched nothing happen to her. Then she cried. I have never prayed so much to hear a child’s cry.
Ever since then Jazlyn has struggled with many health issues. She sees more specialists than a child should see. She sees a cardiologist, neurologist, nutritionist, gastrologist, orthopedic surgeon, metabolic doctor, allergist, optomologist and dermatologist. She also sees a physical therapist, occupational therapist, speech therapist and has a visiting nurse. She is the strongest 2 ½ year old I know. She has given me all the strength I have. Although she spends most of her days at doctors and hospitals this is our life. This is what we’re used to.
I have many fears for Jazlyn. I often wonder if her health will get worse or better. I wonder if she’ll be able to play at recess. Will she ever brush her hair? Can she live a life without medicine? Will there ever be a time that her pediatrician will be the only doctor she sees? I envy parents with healthy children, they say they envy the amount of strength I have. If I could change the way things are, I never would. Jazlyn is truly a miracle child. She never ceases to amaze me or anybody else around us. She is my life, my world and the one thing I’ll never give up on.