I absolutely hate this week!!! Hard to believe it has been 18 years. At least I do not cry like I used to, but I still remember that horrible time. From going into the hospital, him being torn up from being shocked with the paddles, hooked up to all those machines, waiting for results, hearing the doctors say that four days later his brain was not done swelling, to hearing the decision to take him off the machine because he should not have to suffer anymore! Things that you see that you cannot erase from your memory. Thinking about how he felt because he could not tell us, what he went through, losing him. He spent most of his 6 months on this earth at the hospital and had only been home for a week. I know he’s in a better place & has been for 18 years but it’s a shame that we only got to have him here with us for 6 months and it was such a terrible 6 months for him. He was such a fighter, even at the very end! Me and Jason did not EVER give up on him until God took him in his arms Feb 11th, 1997 @ 8pm.
We need to find a cure!!!! No child- no family should ever have to go through this horrible disease!! With awareness & testing it can be prevented. It will be in my family going forward!
Please everyone share something about EB with all of your friends, contacts, family. Spread the word so that we can get funding for more research, bring EB to the forefront!! Every little bit helps to be closer to the END of Epidermolysis Bullosa!!!