I want to run.
How difficult is it to actually talk to a parent with a child that has ALD or has passed away? I have reached out and it isn't easy. I know that most of us feel secluded in a small group amoung a giant crowd and I am here to open a door. You are not alone and we can all help each other and guide each other through what we have and most importantly what our boys have or had gone through. Nobody wants to see the signs of a storm and hide only to come out when it passes to see the end result. I want to run like many or close my eyes and wish it away. I want to run but I can not give Gavin my back. We learn from each other and find what comforts our sons, we evolve around the disorder until we find a cure, but most importantly we need to help each other till that day. I am early in Gavins disorder which as many already know only a minute away from being over my head. I can be reached at boomer.sooner78@yahoo.com where I will give my phone number if you want to speak directly to me. God Bless you and your children!!!!!
Posted By: Knuckles78
Posted On: Dec 3, 2008 10:25 pm
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Re: I want to run.
Well it has been over a year since my son was diagnosed with ALD. We have made many great memories and loved him more than a child could be loved. We took a trip to Duke University Hospital last October just to be told he was to far progressed, even tho he seemed just a little effected. Looking back now I wouldn't have had it any other way! I have yet to even her a real success story with the transplant when the diagnosis is made after a child was symptomatic. Today I lay next to my son and know that he only has days to live. I know that in my heart he was as happy as he couldve been with the year we had left. Coming out of the end with all the knowledge I feel we have, the most priceless information I would be able to pass to anyone is don't jump right in and go straight for transplant if your child was diagnosed because he was symptomatic!!! This disorder is very unforgiving and may take your son away before you can experience the upmost time you may have left! I'm not saying don't do it cause there is always a chance. This is just my prospective and me being totally honest about a situation. Some people may say we should've tried to save his life regardless... We chose to give him all the time he had left to be normal and not put him through what could Have been days or months left of hospital visits just to see the end with out enjoying what time we could have had!! I live with no regrets! I will always love and cherish him! I will always tell him I love him when I wake up and before I go to bed... and every minute in between! Like I said in my post above I will always be here for parents that want to talk!
Posted By: Knuckles78
Posted On: Sep 13, 2009 12:25 pm
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