Join us for the MDA Muscle Walk 2014
When you have a child, you have so many hopes and dreams for them...anxious to see the person they grow up to be. Most of all, like myself, you probably hope for a healthy life for them. What if those plans change? What if you receive a diagnosis that will change your life FOREVER?? Of course you love your child all the same, if not more..Please take time out of your busy day to read the story of my daughter Kaylee Mae, and in the end I hope I can count on you to make a donation that WILL make a difference in her life!
Kaylee Mae was born on Oct 12, 2005 the youngest of my 3 daughters. She is now 8 years old and when you see her, you see a "normal" child, I do not like the word "normal" but it is what we hear all too often. She loves to sing, play, learn, and she is my cuddler! She has a personality that is addicting, she always puts the needs and feelings of others before her own. I have always said that she is this way due to her rough road she has been down. I look back often at little signs, extreme irritability, poor feeding, poor growth, developmental delay. I will not bore you with the countless testing we went through. I will tell you that before we had our FINAL diagnosis, we went to 3 different specialists over about 3 years, even to Cleveland.
Mitochondrial Encephalomyopathy..HUH, WHAT?? I know, I said the same thing.. Mito-we call it for short- is a "rare" neuromuscular disease..I do not consider it rare considering every 30 MINUTES a child is born that will develp a Mito disease by the age of 10. ALSO Mitochondrial Disease kills more children every year than childhood cancers. So why have you not heard of it?? That is exactly what I have been trying to change! Part of the problem is that Mito is so hard to diagnose, and understand. NO TWO CASES ARE ALIKE!
Mitochondria are in almost every cell of your body, we call them the Powerhouse..almost like your body's batteries. They convert all your food over into energy which your body needs so badly just to SURVIVE..without this energy your organs cannot function. In Mito disease, these cells are weak, they cannot complete the steps to make the energy product needed. So with this, your systems can all be affected in some way..especially the muscles, and we have ALOT of muscles in our bodies...THE HEART is one big muscle. As these cells get weaker, they start to burn out, when enough of them burn out then systems begin to fail..which will lead to death.
Kaylee struggles with fatigue so much, some days she may do great, others she is exhausted. Her muscles are weak and she requires several types of devices to help her remain functional. She wears a Bi-Pap machine at night to assist her with breathing since her lungs are weak..a simple cold can turn scary very quickly. She wears leg braces and uses a wheelchair when she feels the need too. Her brain has involvement, she is unable to retain short term information very long, she needs a lot of extra help in school. A few years ago we learned that Kaylee's brain has started to die in certain areas (cells loosing energy), this has caused her brain to start to shrink. I was devastated, and terrified, all we can do is hope this progresses very slowly. As this does continue she will no doubt begin to loose function in many ways, such as eating, walking, and talking. I know she is in some sort of pain daily, she has learned to adapt to this. It seems that we are always finding something "new" going on in her little body. Recently Kaylee is battling severe scoliosis as well as a slipped vertebrae in her spine. We literally are buying time with a horribly uncomfortable body brace. The surgery itself is extremely risky and life threatning for her, so once again we find ourselves just waiting. She has had to learn to do things that used to be so easy for her, while wearing the new brace. Her case is so severe that they are requesting she wear it for 23 hours a day! I tell you all this just to give you a glimpse into what has become due to her disease...yet through it all, she still gives me that smile, those hugs and kisses, and too often wipes the tears away from MY eyes.
This has been a journey I do not wish upon anyone! Surgery, needles, painful testing, painful way of life, yet she looks so "normal" on the outside, while inside things are dying. I will never forget when the specialist in Cleveland..I called him the Mito Guru..turned to me and told me that due to several factors we would be lucky if Kaylee made it to 10 years old! My world crumbled, I spent the following year grieving over something that I had no control over. It shakes you to the core. I do not know what is going to happen, or when, I try not to think about it since it pulls the breath right out of me. I do know she is the strongest kid I know, I know that I cannot lose hope and I have to tell her story..we have lost so many dear friends to this disease that I question the purpose of it all. This may be just another story to you, but this is my harsh and painful reality. I will lose her one day, but until then I love her more, and I do my part to spread awareness..in hopes to find a cure. I have often felt lost in life..her journey has helped me find my own purpose in life. I currently am completing my last semester in nursing school. I hope to be able to help her as well as other children and families going through the same thing. She has changed my life and the lives of everyone she meets.
Please help give to an organization that truly does help us in many ways...shots, equipment, costs of clinic, support groups, most of all Kaylee gets to spend a wonderful life changing week at a camp full of other children that know what it is like to be in her shoes! It is the only place she says she has ever felt "normal"..ANYTHING you can give does and will make a difference...from the bottom of my heart I thank you.
The Lemon-Hendricks Family
The Zielke Family