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Tyler's EB Awareness Inc

Life After Tyler

Blog

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Awareness

Posted on June 5, 2019 at 10:36 PM Comments comments (17)
Thank you for all of the comments. The awareness is very appreciated!!! Please continue to share so that one day everyone will know what EB is. And God willing we can find a cure.

Wishes

Posted on December 29, 2016 at 1:02 PM Comments comments (20)
Hi - I hope that everyone had a wonderful Christmas. I hope that the true meaning of Christmas was heard in your household. And I want to wish everyone a year full of blessings and miracles for 2017. I pray for everyone daily but especially for the EB community. May God bless us with a cure in 2017 so no more have to suffer on a daily basis whether it be kids, adults, family, caregivers.......
Tyler I will never give up, I will never stop praying, I will never forget! 

Prayers

Posted on December 6, 2016 at 1:06 PM Comments comments (12)
God- please bless all those with EB. Work thru all those researchers to find a cure. Touch all those people able to donate for research to happen. And speak to everyone so that they lift up prayers to you for a cure. #CureEB #EBawareness

8/13/16

Posted on August 13, 2016 at 4:00 PM Comments comments (4)
I really do not like 8/13 or 2/11- they make me so sad. Today is your birthday. You would have been 20 years old today. You have been gone for 19 1/2 years, my lord it seems like yesterday. I still remember how little you were. How fragile you were. Those big beautiful blue eyes that looked at me with so much love. I would give anything to see what those eyes looked like today. Please continue to watch over all of the butterfly kids beside God little man. They really need you. Help guide the doctors and researchers to a cure. Happy birthday Tyler- I love you very much. And still miss you terribly!!! #CureEB

Angry

Posted on June 13, 2016 at 12:51 PM Comments comments (6)
Ok so I have not been on here since February. It is hard - trying so hard to get people to care about EB, to educate them, to know that people, kids are suffering, it is sometimes OVERWHELMING. And I have two kids and a job so this has to be my side thing. At times I want to give up, because I do not believe I am making a difference. I think a lot of people visit the side but does it matter???? I am a nobody that does not have money or know anyone important or anyone with rich friends or people with influence so I am not able to help with research so I have come to terms with maybe my only contribution is awareness. But am I getting the word out??? I think I was banging my head again since Feb. and wanting to give up but it never fails that I get that message in my heart from Tyler or maybe God. So this morning I happened to check my facebook and saw that I had a notification from the EB Lounge ( I know I do not have kids or even any other relatives with EB but I often pray for the people who post since that is all I can do) and for some reason I clicked on it. I began to sob for this poor boy and his family. I just do not understand why???? Why this has to happened, why so many have to suffer, why did my family loose Tyler??? After 19 years I still do not understand. 
And it makes me so mad that everyone knows Breast Cancer, Skin Cancer, Diabetes, Crohns, Heart Disease, Autism-- but no one knows EB. Don't get me wrong, I do not want to offend anyone with any of these conditions but none of these diseases are any more important than EB. And EB is painfully cruel. 
These pics are horrifying and I have been praying for Jon all morning. My nephew Tyler did not have to suffer very long since his life was cut so short. I can not even fathom how these kids do it for so long with these conditions. WHY????
Please everyone spread the word, share, make a donation of money or time, PRAY. 
Please do something to make a difference so we do not have to loose anymore :(

2/12-2/14

Posted on February 12, 2016 at 12:58 PM Comments comments (12)
....so I have cried my eyes out back then and now. I remember helping them over the next two days make the arrangements for our little man. It was so hard. I even went so far as to help my brother dress Tyler at the funeral home so that P would not be able to be around him. My contempt and loathing for her was so strong most of my life but at that time it was overflowing. My friend would not help- he did not want to have those memories and I understand now. At times I wish I did not see the images in my head that I have. They have faded some with time, thank goodness. Everyone praised my strength for doing everything I did but my hatred was stronger, that's how I was able to do it. Deep down I know that she had something to do with his death. And she has to live with that if she did. I will believe that until the day I die. And I do not think I was the only one. We buried him on Valentine's Day. I have not celebrated that holiday for the last 19 years (my husband & I celebrate Sweetest Day- thank you Hallmark for creating it) :). 
My brother and his wife divorced. His 2nd wife and him had three children but the monster that she is did not want to have anything to do with Tyler so his kids no nothing of their brother. Tyler's grandma still grieves for him I think more than anyone. I know that it hurt our family but it was almost like they all removed themselves from it. We definatley do not have a close family at all. And we are a very small family but we do not know what side of the family has the mutation. It has to be our dad or P because both my brother and myself have the gene mutation. I am very aware because of my kids. EB will end with us. But I have cousins that are newly married and what if it is that side??? It still just amazes me that 19 years later and not everyone in the world knows what EB is.... it affects 1 in 20,000 births people. 
I know that everyone says that God has a plan for everything- I do believe that but sometimes it is VERY HARD!!! Like why did my nephew have to suffer, what was the purpose??? I do not see anything that came out of it except sorrow. And all of the kids and adults that suffer from it- it is agony. The doctors said that Tyler did not know any different so it may not have been that bad for him, a constant tingle like when you have a burn but how did they really know- he could not tell us. All of the parents who have to watch their kids suffer. Watch them cry, hurt, weeping with them....what is it all for God. Most of the time you will never know his plan but this sure would be a great disease to cure!! Prayers non-stop to God for a cure. I do believe that I will never truly understand his plan in this situation, that I just have to accept it. It is very hard-- still. This is where my faith stumbles. 
But I know that I will never stop praying for a cure. Never stop having faith that it will end. That I will never stop plugging away for awareness. When I think about quitting, Tyler visits me in my dreams (or is it God). 
Please everyone share your awareness!! Donate so the brilliant scientist can find a cure!! Let's end this HORRIBLE disease so no more families have to suffer!! #EBawareness #CureEB

2/11

Posted on February 11, 2016 at 1:18 PM Comments comments (4)

2-10 & 2-11

Posted on February 11, 2016 at 1:03 PM Comments comments (3)
Ok so on February 10, 1997 the doctors determined from the test that was ran that Tyler's brain was still swelling. They told us that if he survived he would not be able to talk, to walk- he would have a hard time eating let alone feeding himself, he would have problems learning, he would have problems with seeing and hearing. UGH, I died a little listening to the doctors tell my brother and his wife. The doctors showed me the results because I was the one that did not care his condition, I was going to take care of him. They more or less said if he made it he would not have a life with all of the problems on top of his EB. 
It was left to my brother and his wife (well now ex-wife) to make the decision if they were going to turn off the machines. All day on the 10th, Jason and I spent as much time with him as we could. Everyone that had been there over the last 4 days I think were taking the time to say goodbye except for him and I. I wanted to make sure he knew that we never gave up on him!! 
They decided to turn off the machines because they felt that his life with God would be better than all of the suffering he would have here with us if he survived. It was decided that it would be 2/11/97 @ 8pm so we could have family make it in. I do not think I have ever cried more in my entire life than I did Feb. 10, 1997. I prayed that the next day would not come- but it did. Jason & I still did not talk about the end with Tyler- it was all positive! I was true to not giving up on him to the end. 
Feb 11, 1997 : 8pm came and there were so many people there to say goodbye. Normally there were only allowed 2 people at a time in the ICU room but there had to have been 30-35 there at 8pm gathered around the bed of our precious butterfly baby. I had a couple more friends show up to support me. The nurse began unhooking everything, She got all of the wires taken off and my brother held him- passed him to his wife and she held him until he took his last breath, 11 minutes later. There was not a dry eye in the ICU, nurse tearing up, total strangers with family members in the ICU were all tearing up. 
Tyler's doctor was there. Tyler was the first patient that he had ever lost. My heart was BROKEN.......

2-5 to 2-9

Posted on February 9, 2016 at 3:13 PM Comments comments (5)
So on Feb 6th we meet Tyler's parents for midnight bowling. We were still so excited for him to be home. He was left with someone we thought was responsible...... We made it to the parking lot when I got the call that Tyler was not breathing, paramedics had arrived and he was on the way to the hospital. They said the paramedics had shocked him to get this heart going, I was terrified at what that had done to his poor little chest. We raced to the hospital. Once we got there we found him, he was not doing well. He was all hooked up to machines, tubes everywhere. And what I feared- those paddles had torn apart his chest. Turns out that he had gone without breathing for almost twenty minutes. 2/7-2/8-2/9 I had not left the hospital. I was so tired. I did not want to leave him. Thank goodness a friend was with me- he was my rock at that moment. It seemed like everyone was giving up- but I had hope. We talked to Tyler telling him all of the things we were going to teach him to do, all of the skills that me and my friend had that we were going to pass along--me softball and my friend swimming. I wanted him to know that we had not given up on him!! 
If you were in the ICU with us you were not allowed to have sorrow or doubts- you would have to wait until my time with my nephew was over for you to say your goodbyes, I was hopeful that he was going to make it. Even some of the family was worried that I was not preparing for what was going to happen, that I was going to break down when the time came and would not be able to handle it. But my friend supported me and told them that I had hope and that I was the strongest person there. That maybe more of them needed some faith.
Tyler's parents even wavered- I told them that I wanted 100% proof that he was not there with us anymore because when we were in the room you could see that our little fighter was trying- he was pushing against the ventilator, we could see it, even a nurse saw it. If they did not want to take care of him because it was going to be too hard, I was!! We were told that 4 days in, Tyler's brain was not done swelling yet, my heart sank!! The doctors agreed to do one more test to see what activity they could see. They said it would take a while so I finally after 4 days left the hospital to take a shower. We returned as soon as we were done- praying the entire time we were away from him....

2-4-16

Posted on February 4, 2016 at 12:55 PM Comments comments (3)
Ok my thoughts for today are so mixed. I remember that tomorrow starts the worst week of the year for me. And I am so discouraged by how long it has been and still how much of the struggle this nasty disease is. But I am torn, always torn because of that little glimmer of hope. Such a small word but it is so powerful. I never give up because of hope and my love for Tyler. 
Ok so I guess for today let me just ask that everyone PRAY! Pray for no more suffering, pray for a major research break thru, pray for a CURE! #EBawareness #CureEB

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