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Awareness
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8/13/16
Angry

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EB Awareness Week
February
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Life After Tyler

Awareness

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

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

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

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

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

....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


2-10 & 2-11

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

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

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

2-2

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 :(

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

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

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

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

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

400 visitors in the last month- way to go- keep spreading the word everyone!! And from the bottom of my heart- THANK YOU!!

5K

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

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 questions@tylersebawareness.com. 

Feb 11th

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!!!

1-9-15

Rare Disease Day- February 28, 2015 - make a difference!!!! As of today I have had 5495 visitors to the website, 8003 page views and have 93 Likes on Facebook. Pass the word, help us get to 1000 likes. The more awareness there is the more likely we are to find a cure!!

YEAH

Celebrating- we hit 5000 visitors to the website!!! Keep sharing everyone!!!

10/28/14

Keep the views coming!! 142 visitors to the site in 24 hours- YEAH!!! The more visitors, the more awareness. Everyone share with your families, co-workers, friends...everyone. Please spread the word- EB is a nasty horrible genetic disorder!! 

National EB Awareness Week

Hi All- National EB Awareness Week is 10/25/14-10/31/14. Please make a difference. Like any EB page on Facebook and share with your friends. Ours is Tyler's EB Awareness. Share any EB website with your contact list. Email your local paper to write a story, email your local news station to run a segment. Spread the word about EB so that more will take interest. There needs to be more awareness so that a cure can be found. 
It was so frustrating watching 60 Minutes last night. They were talking about genetic testing and kept mentioning diabetes and different kinds of cancer--- WHAT ABOUT EB????? Mention EB for gods sake!!! UUUGGGHHH.
I understand that those diseases are terrible but have you seen an EB child. To watch an innocent victim suffer. It is horrible!!! Please make a difference this week. Make a donation to an EB organization or even share awareness. The more that know the better those kids will be! 

Happy Birthday

Happy birthday Tyler. Today would have been your 18th birthday. I can not believe that you have been gone for over 17 years already. I try to picture what you would look like. And I try to imagine how you would interact with my kids. I still miss you very much! I am still trying to get the word out so that everyone knows what EB is. It is a very hard struggle! 
Please continue to bless all of the children here on earth that have to live with EB everyday. You know what a struggle it is! Watch over them from heaven little man! I love you Tyler!! 

YEAH

3000 visitors to the website!!!!! Whoop Whoop!!!! 

Remembering

I am dreading next week. Every year I completely remember everything that happened from 2/8 to 2/14 and it sucks!!! 17 years later and it's only a little easier. Maybe T wants it that way so I do not ever stop trying to get the word out about EB. That I never stop trying to find a cure so all of those kids do not have to suffer the way he did. It is very hard most of time though to keep going. I am such a very small fish in a very LARGE pond. Miss you Tyler!!

Over 1000 Visitors

1096 visitors to our website!!! Whoo Hoo!!! Thank you everyone!! Keep spreading the word about EB!!!

2013 National EB Awareness Week

Hey everyone- 2013 National EB Awareness Week is October 25th - October 31st. Please help is some fashion either by getting the word out about EB or making a donation. EB is a horrible disease! No child should have to suffer the way that they do. Please share my website or any other EB organization for that matter. The more people that know about EB, the more of a chance we have to find a cure!!! Thank you!!

8/13/13

Today Tyler would have been 17 years old. Happy birthday little man! We still miss you!!!

Tyler's EB Awareness Inc.

Hope everyone likes our new website. Definitely more to come...