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|My nephew Leran suddenly started getting seizures and died suddenly at the age of 6. We didn't know what was wrong at the time but now it makes sense. My son, Ryan was been diagnosed with ALD in October 2008 at the age of 21. I'm trying very hard to come to terms with this sickness. I've seen him deteriorate rapidly in 4 months. He can no longer see properly, go the loo on his own, bath himself and his memory. Please let me know if there is a support group in Cape Town, South Africa for this sickness.|
|Justin, Mike, and Christopher - my family's heart
|It will be 10 years in Feb. since I lost my big brother at the age of 23 to ALD. He was preceded in death by my uncle and cousin. My brother watched and helped take care of our uncle as he deteriorated, knowning that would be him in a few years. To be 20 years old and faced with such a harsh reality is beyond my understanding. That is true strength and for that Justin is my hero. As much as my heart aches with sadness and tears of loss are shed, I am grateful that their beautiful souls are free of a body that failed them so horribly. I love and miss you all (my brother Justin, my uncle Mike, and my cousin Christopher)|
|Over a decade.
By:A disease that lives on long after death.
|My father died of ALD at the age of thirty four. I was eight years old. It's been over a decade since my father's passing, but I still cannot get past how much this disease affects my life today. To this day, I cannot erase the memory of my father's blank face, of him not knowing who I was. But worse than that, I know virtually nothing about this disease. This disease that has the potential to kill children I have yet to bear. This disease has the ability to shape the course of my life. There have been many times that I've thought I will not have children. So many times I've thought I will not bring a child into this world holding such a curse. I do not want to put another little girl in my shoes...even worse, I don't want to give the gift of life to a little boy, only to see him die the same death as my father. I haven't been around ALD for over a decade, but it's still in my life. When I dream about the day I get married, it tears at me to know there won't be anyone to give me away. But what's worse than that are the times that I don't expect to feel that pain. At eight years old I can remember thinking about how my father would never get to see me grow, never get to scare my future boyfriends, never get to watch Cops with me ever again. But I never thought about when I would come to miss him most. When I felt lost after getting out of an abusive relationship...after wrecking my car...when no one is around to stick up for me when I know my father would have. These are the things that make me want to pound knowledge about ALD into every doctor's head. More research needs to be done. More people need to be informed. The way this disease degenerates a person is absolutely sickening. Watching my father slip away piece by piece right before my eyes ended my childhood shortly after the age of five. There needs to be more knowledge of the way this disease has the ability to make a perfect daddy not recognize his little queen. The day my father had absolutely no recognition of me was the day my childhood officially ended. There shouldn't be any more little girls like me. There shouldn't be any more little boys that same age dying to the same disease. There shouldn't be such sickness in any child's world.|
|My son Nicholas passed away January 7th, 2009. He was 6 years old. He loved transformers. His favorite was optomus prime. He loved his optomus prime so much even when he could not enjoy anything any more he still enjoyed holding it. He would keep it by his side all the time.|
|On Monday I got a call from Brady Troy's brother telling me that Troy passed away on Sunday. I seen Troy go down hill slowly over a 7-8 yr span. I know his family seen more than I did. Troy was a stubborn man and he didn't want to let anybody know that this dreadfull illness was getting the best of him. He always told me that other people need more sympathy than he did. When I first met Troy I could tell that there was somthing wrong and over time of knowing him he shared with me about his illness. It's sad to see a perfectly healthy, verry active man slowely die. If it wasn't for Troy coaching my husband on cheesy pick up lines than we would have never gotten together. I didn't see Troy for the last 3 yrs of his life because anytime we talked about visiting he would make up some excuse to why he couldn't visit or have any company. Finally one day I asked him on the phone why? He said to me "because the desease is killing me, I want you to keep the old memories of me and not new ones of me dieing" I respected his wishes. We used to argue about watching the Utah Jazz play on TV because I didn't like to watch it and now I would let Troy watch the Jazz if it ment that I could spend one more moment in time with Troy. I Love You and miss you Troy you touched my soul. "Your perfect now buddy."|
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