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Tyler's EB Awareness Inc

Life After Tyler

Blog

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2-2

Posted on February 2, 2016 at 12:43 PM Comments comments (5)
Trying to relive this week so he is not forgotten. I ABSOLUTELY hate this week of the year!!!!
......so we were so happy that he was home. I think I was able to visit him once this week. I remember praying that some of the swelling from the steroids would go down and that he would eat. I did not want him to go back to the hospital. 
I wish I would have known what was coming. I know I would have spent every minute with him. And who knows, if I would have been there then she wouldn't have been. I know I am not the only person in Tyler's life who thinks that she had something to do with it. I guess only her, Tyler and God know the truth. I know that God has a plan for everything, but sometimes it is really hard to believe, to have faith without understanding. 
Even after 19 years I still do not understand why this little beautiful boy had to suffer the way he did and leave us so soon. Why other beautiful little kids have to suffer on a daily basis. Why the parents and siblings have to suffer everyday with the agony of this disease. I guess my thoughts for today is EB SUCKS!!!

February :(

Posted on February 1, 2016 at 12:57 PM Comments comments (10)
Feb 1st- I dislike this month. Have since 1997. We were all so excited back then. He was finally coming home after being in Nationwide's Children's for almost 4 months. He was finally back up to his birth weight being close to 6 months old. He was so swollen though, that's what I remember, his poor little body being so plump that it seemed he would be uncomfortable, but he was never able to tell us anything. Just those beautiful blue eyes, looking at us, feeling how much he loved us and me hoping that he could see how much I loved him!!!

AMAZING

Posted on December 2, 2015 at 12:55 PM Comments comments (159)
Oh heck yes- I have pasted 10K visitors to the website!! AMAZING!! I hope the information is educational and useful. Hope you all have a fantastic day!! 

Prayers

Posted on November 22, 2015 at 7:08 PM Comments comments (105)
Hi- ok I am going to try to write something everyday. Tyler has been heavy on my heart lately. Maybe it is because I have liked or joined more EB sites on Facebook and Twitter so I am seeing more and more pics of what these poor kids have to go thru. Or maybe because we had another awareness week come and go without him. There have been 18 of them. Where has the time went??? I often wonder what he would look like, whether like Jeff or Lori? And how tall he would be? And how much my kids would love him. And then I think maybe him leaving us so early was God's way of answering our prayers, well my prayers. I prayed every day for him not to have to suffer any longer to be cured. That is what he did by taking Tyler with him, he cured him. But I guess I am selfish- I wanted him to cure Tyler down here. Then I wonder what life would have been like for the last 18 years. I know I have spent a lot of time crying. Crying for missing him, crying for all of the kids and adults who have to suffer, crying for all of the time that has passed and still not everyone knows what EB is and most of all crying because of all of the people who turn a def ear or blind eye to what EB patients have to go thru and staying ignorant because it is easier than spreading awareness. What they do not realize is that 1 in 30,000 have it. That is a lot of people walking around without a clue. Only when they have a baby with someone or someone in their family has an EB child will anyone know. Ok I am balling my eyes out and can not see to type any more tonight. Prayers to all of those who have to suffer from EB that a cure will be found so that they can live a long happy life with their families pain free. Prayers to all of those family members who have to watch their loved ones suffer that God grants you peace and support. And prayers that a cure for this terrible disease will be discovered soon!!! 

EB Awareness Week

Posted on October 19, 2015 at 2:06 PM Comments comments (4)
Hi- EB Awareness week is 10/25-10/31/15. 
Please help however you can:
Donate- there are so many great organizations that help EB families and research
Spread the Word- the more attention EB gets the more funding and research it will get
Fundraise- put together an event or even sell candy bars
Anything or everything is welcome and will help some child suffering from this horrible disease!! EB must be cured. There is a great fundraiser that EBMRF is doing right now- here are the details:

One Lucky Winner and a guest will get a chance to meet Ed Sheeran and watch him perform at a private event in Malibu on Sunday, November 15. Proceeds benefit The Epidermolysis Bullosa Medical Research Foundation’s mission to fund a cure for this life threatening and debilitating genetic disorder (www.ebkids.org).
 
Donate $10 on www.crowdrise.com/rock4eb for a chance to attend (plus up to $1,000 to help cover travel and accommodation costs). This is the ONLY pair of tickets being made available to the public for this event.  You can donate as many times as you'd like to increase your chances to win ($10 one chance,  $50 five chances, etc.).
 
Feel free to share this campaign with other people and help raise awareness for EB!
 
This campaign closes November 6th.

Till next time #CureEB

8-5-15

Posted on August 5, 2015 at 12:43 PM Comments comments (6)
Wow, a 1000 visitors to the website in 2 months. And from all over, that's cool. Sorry it's been a while since I added additional resources to the site, been crazy busy with the family. Please give me feed back if there is anything that would be beneficial to add to make this a more useful site for those researching EB. Hey did I mention EB SUCKS!!!! Catch everyone soon! Keep sharing - thanks!

7000 Visitors to the site

Posted on May 19, 2015 at 10:48 AM Comments comments (12)
400 visitors in the last month- way to go- keep spreading the word everyone!! And from the bottom of my heart- THANK YOU!!

5K

Posted on May 4, 2015 at 10:16 AM Comments comments (3)
I am thinking of having a 5K as a fundraiser this year, maybe. Let me know your feedback. I am not a runner so would you runners out there be more apt to come out in mid August or late October? I am leaning toward October but not set. And if anyone has suggestions for a name. I want this to grow every year and I think a race name is very important. I was told not to use the company name as the title, that if people could not relate they would not come out. I am been racking my brain to come up with something catchy that would involve the community and be open to sponsors. I think I like "They Are Worth It 5k". Thoughts anyone??

Visitors

Posted on April 28, 2015 at 11:51 AM Comments comments (318)
Wow- 6717 visitors to the website. From all over the world. That is amazing!!! 
Keep spreading the word everyone so we can find a cure!! 
I would love feedback. Feedback on how to improve it to help more, what kind of information would be more beneficial to those who suffer from the disease. Or caretakers of those suffering. 
Email me at [email protected] 

Feb 11th

Posted on February 10, 2015 at 10:07 PM Comments comments (31)
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!!!


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