Central Core Disease

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Central Core Disease
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    Community Voices

    Hope and a purpose

    I'm living with Central Core Disease but I'm still living! I'm 58, with 3 children and 8 grandkids. Truly blessed! I've been thinking about my life lately, and I remembered my "friend" in the bed next to me before, during and after our scoliosis surgery, both age 15. We laughed, sang along with the radio, joked with the staff, and had no idea what life would look like for us. We had hope for our futures. I had CCD, she did not. Years later, I see how I have continued to laugh, sing, and joke around to show others how well I am doing and to be a light to people who had less to deal with than I did. I didn't show the painful, weak side of myself.
    I recently moved, and met my neighbor. She has CMT. She has extreme hearing and scent sensitivity. She never comes out of her house. Never.
    Now I think I was given this 'gift' of being put here for a reason. We lift each other up with daily phone calls, we share with brutal honesty the effects of our disease(s), we listen and sing to music, and encourage one another. We respect each other with time alone when we have bad days. We text and e-mail. There is only one wall between us. We never see each other. But we are bonded.
    Never give up. I have a new purpose, at 58. I never thought I'd get this 'old'. I didn't WANT to. I have a new hope. I have a purpose.

    Community Voices

    Making Lakeside Accesible

    <p>Making Lakeside Accesible</p>
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    Maria Jansson

    Thank You Central Core Disease, Even Though You've Caused Pain

    Dear Central Core Disease, I don’t like you. As a matter of fact, I hate you. You have caused so much hurt to my family. Five months ago, I gave birth to a beautiful little boy, Amadeus. And right away, you had to hurt me by showing the world Amadeus wasn’t alone — he had you with him. The midwife took him away before I even had the time to hold him. He couldn’t breath or move. His pulse and oxygen saturation were both dangerously low. For that, I will always feel hate toward you. At that time, we didn’t know it was you. The doctors thought it was centronuclear myopathy that had entered my son’s body. After a muscle biopsy, we found out we had to learn about you instead. But you are a secret little fella, aren’t you? There isn’t much information about you. Not anything we can read, anyway. Because of you, I am afraid to hold my baby. Because of you, I have built up a wall around me so I can’t break down. Because of you, I’ve cried countless tears in the shower. Because of you, I’ve already planned my son’s funeral. Because of you, I don’t remember much from my first months with my baby. Because of you, my 5-month-old baby has had to be the bravest little warrior I know. Because of you, his three older brothers didn’t get to meet their brother at home after he was born. Amadeus has had a tracheostomy done, he endures treatments on a daily basis and he’s still in hospital because he needs nursing 24/7. Because of you. But also because of you, Amadeus will grow up in a loving family. Because of you, his dad and I found our way back to our love that was broken. Now we are stronger than ever, and for that, I thank you. I thank you for making me appreciate family and friends in a way I never knew was possible. I thank you for helping me understand how parents to children with a disease feel. Even though we parents go through different diagnoses and emotions, we do have one thing in common — we will never stop fighting for our beautiful children. Though we don’t meet or talk or write to each other, we are a huge family. And families have each other’s back. Families are there for one another. Families love each other unconditionally. I now know I love heaps of people — people I don’t know and people I know I’ll never meet — but who will forever have a special place in my heart. And I promise you, Central Core Disease, I promise I will spend the rest of my life learning how you work and will do whatever I can so you won’t hurt another family. I’m thankful for a lot of things because of you, but I still do not like you. Sincerely, Maria This post originally appeared on Miss Bitterfitta. For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post tocommunity@themighty.com. Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio. Want to end the stigma around disability? Like us on Facebook . And sign up for what we hope will be your favorite thing to read at night .