My Unsung Hero-- Through The Eyes of a 13 yr Old Me:
Its Funny how something tragic can actually bring people closer then they ever were. For example, Michael had had a “hard” life, with a tiresome job. He was also not really able to see his kids or wife. But, in 1995 his life became even harder when he was diagnosed with Fabry’s disease (which is a lack of a certain enzyme in the body). Then in 1999 at the age of 39 it was found that Michael’s kidneys were no longer working and he was in need of a transplant. He could no longer work and had to be on a dialysis machine. In 2000, he received a transplant and could be free from the machine he had to be connected to early in the morning and late at night. It was said that he would die at the age of 40 like most people who suffer from Fabry’s disease, but because of the excellent treatment, he is living strong at the age of 47.
If you haven’t guessed already, this man Michael is my dad. He means so much to me that I don’t know what I’d do without the strange jokes he uses to gross out my friends and I or even his obsession over electronics and super heroes. The main reason he is my unsung hero is because of his will to live. There are a lot of symptoms of Fabry disease such as: damaging of the nerves in the body, severe depression, and/or short term memory loss, but he tries his best to live each day. He still doesn’t work and is Mr. Mom for the household and I think that men of any age should learn from him. He is a loving respecting husband, father, and friend to his loved ones and I know I would be no where without him.
The day my dad got called in for his kidney everything was in chaos. My mom was off the walls. I was balling my eyes out, my next door neighbors were cheering and my dad was just smiling. It was like something in the bible where the battle of St. Michael and the devil would be. My dad was St. Michael and the devil dragon was the disease. He likes to tell that story because of the tattoo on his leg. My dad’s favorite part of the story is when St. Michael wins. He is like St. Michael because he is strong but, not just physically. He is also strong mentally and emotionally.
There were days I would break down and cry because daddy had to go to the hospital again. I was so afraid he wouldn’t come back that I would think to the future and see me sad without him there beside me. Most of all I remember crying because I thought about how daddy and I couldn’t dance at my wedding. It was a bad way to think but that’s what people do when they are worried, they think bad thoughts. When he went to an infusion, just for 2-3 hours, I would sit home and look back on the afternoons we would go get sushi from our favorite restaurant or go out driving and never know where we’d end up. Its days like those people take for granted but I could never do that. He is only one man, and he can only live once. He is my daddy, my father, my unsung hero.




This is seriously making me tear up at the eye. I have been and will always be daddy's little girl . I know what you mean about your dad being your hero and how you look at him with such pride to have him as your dad. Hope that his remaining years on earth with you are nothing but the best!
All I can be is simply me
-Mz Liz
This really did make me tear up as well. My Dad is my hero as well, and I have no idea what I would do without him. I fear that day. You, your Dad, and your family is very strong and I admire you for that.
Cherish every moment.
Hi Amanda,
Your story is great. It is very thoughtful. It has a great ending, or beginning depending on how you look at it. and it hits very close to home. I am a 52 year old male and I also have Fabry disease. I have been on enzyme replacement therapy for 5 years an I'm doing great!
We just started a new organization to support individuals with Fabry disease and their families. Our website is www.TheNFDF.org. Please take a look at the site and share it with your father. There is a section about females with Fabry disease under the "Individuals with Fabry disease" tab on the left menu bar. You can register on the site which provides access to a couple of features not open to non-members. Please see the "Why register" section on the home page for more information.
Take care, Jerry Walter
Amanda,
What a great tribute to a dad! I shared it with my readers, with a link back to your post in the At-Home Dad Network.
Thanks!!
- Peter
www.athomedad.com