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One mother’s hope, a cure for EB

IMG_0282_1-25Elisa is my third daughter and she was born with Epidermolysis Bullosa (EB).  She has a severe form of the Recessive Dystrophic form of EB .  What is EB? The scientific answer is: “a genetic disease where the lack of collagen VII (the glue for your skin) causes the layers of skin to not adhere to each other and form blisters”. The truth is that EB (in severe forms) is a long, terminal disease.  Yes, because no matter what you do as a caretaker of someone with EB, after years, or even only a few months of every day suffering they die.  So, for a parent, in my case a mom, how am I suppose to wrap my head around the fact that I am going to bury my daughter? It is just the most unnatural thing that a parent can think of. IMG_0393_1_30My Elisa, has an inexplicable severity in the mucosal membranes (the whole GI tract), so no matter how careful I can be or how meticulously I bandage her, I cannot prevent the internal blistering.  At only three months she already had been in the ER two times for two episodes in which she nearly suffocated.  Daily, painful dressing changes of an hour or so to wrap every single blister and to separate fingers and toes or they will fuse together; dreadful baths where you have all her body exposed and the fear of sheering the skin off; constant itching due to the deterioration of the nerve endings because of the inflamed wounds; chronic not healing wounds, to disinfect constantly to prevent infections; eyes blisters and or abrasions, and much more….this is the daily life of an for someone with EB. For the first six months of her life I didn’t know how I would have survived, how my family would handle the whole thing. Elisa’s sisters (Greta 6 and Stella 4 ) could not cuddle her, play with her, feed her and could not understand why.  All of your plans, dreams, and routine are broken. We can’t go out all together, we can’t bring her to crowded places if she has wound on her face, the ones that you can’t cover and inevitably, the family gets split. You try to keep spirits high, you keep reminding yourself to live day by day, enjoy every moment.  Then you wake up in the morning to the same “groundhog day” and you see your daughter sleeping in a pool of blood and fluid from a blister in her mouth and or esophagus and you are actually happy about it because it means that it popped and she didn’t suffocate while sleeping.  Then you start all over again, your EB day.  Now, you can get Freud as your shrink but, really, can you get used to all this?  Or to the idea of seeing you child suffer day and night and knowing that the end of this will be only when she dies?

IMG_1093No, that is my answer.  I can’t.  I chose hope, hope that here is someone out there that could change things.  And I found that someone.  We met Dr. Tolar and our life changed. He is conducting a trial for who suffer from EB.  The idea is to give the patient healthy stem cells from a donor in the hopes that these cells will go and fix the wounded sites and produce the missing collagen for a healthy skin.  It is not a cure but, in cases like Elisa could improve her condition and give her a life that she would not otherwise have.  We decided that we would not watch Elisa suffer the few years of life that she had in front of her and try to make her life better knowing that there were risks, or that she could not even make it.  But, did that really matter? She gave us the answer when she became so sever that needed an esophagus dilation almost every month.  IMG_2485At the age of 16 months Elisa underwent the bone marrow transplant at the Children’s Hospital at the University of Minnesota.  Dr. Tolar has been on her side since she was four months old and we prepared her as much as possible for this “system reboot!”.  We are now at day +180 and her life has already changed. There are no dressing changes anymore, and all the chronic wounds are healed.  Hands and feet are always exposed and she can now touch mommy’s face, and grab a balloon or anything that she could not do with gloves. She does not itch like before, only when blisters are healing.  Yes, she still gets blisters but they are smaller and heal in a matter of days.  She had few complications from the transplant that we needed to address and we are still dealing with some side effects from the drugs.  It is a long recovery process but she can now sleep through the night and she is happy almost all of the time. I don’t know if she will make it, we are still in the process of fixing things.  What I do know is that she, among others, have been part of the cure for EB.  Anything we have gained, anything we have learned with Elisa’s BMT will not only benefit her, but also those that will follow.  When Dr. Tolar finds the cure it will be because of Elisa and all the other children that underwent this life changing transplant.  My only hope is that it will come soon enough so that she could live the rest of her life without EB.

 

-Gabriella, Elisa’s mommy

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Find a cure for Epidermolysis Bullosa and #stopEB

IrefuseEB.org founder Christie Zink recently took part in the #stopEB campaign and we are happy to help Autumn Stone in her efforts to raise awareness and research funding to help #stopEB.

What EB Means to Me

Autumn Stone

 

Epidermolysis10639522_629341233851062_5756820980188846641_n Bullosa is a connective tissue disorder in which the skin blisters and can peel off from a simple minor injury or something as simple as touch. EB, to me, is the heartbreaking story of a mother having to watch her precious baby deteriorate. A father not allowed to throw their child in the air. A family so focused on taking care of their child affected by EB that they sometimes don’t give enough attention to their other children. EB is expensive. In all senses. It is financially and emotionally draining for the entire family. My brother suffers daily from EB Simplex that did not appear until his teenage years. My aunt died in the sixties from Herlitz Junctional EB, it was referred to as Lethal EB then. My grandmother managed to keep my aunt alive for 6 years. She lost her eyesight. She had no voice. She weighed 15 pounds when she got her wings. She was not supposed to make it past a year maximum. But she did.

 

Sometimes you need someone, somewhere in the world to relate to your situation and give you a little hope. The support from others can make day by day life a little easier, lighter. To know that you are not carrying this burden alone, makes it somewhat less heavy. There have been so many people from all over the world joining in with their pictures of their hands with the letters EB on them. It has been a beautiful thing in the EB community to feel so joined together.

 

I started this campaign because I was told not to have anymore children. I was told to abort my son. I am a carrier of Herlitz Junctional Epidermolysis Bullosa. When pregnant with my son, I had genetic screening done and there was an extremely high chance that my son could be born with HJEB. I visited the high risk doctor and genetic counselor and they advised that I get some extensive ultrasounds done, and then suggested amniocentesis testing. I was not comfortable with the risks of amniocentesis, or hearing that he was certainly affected and being told to make a choice of death or death in a year, so I chose to carry my son to term not knowing if he would be affected by EB or not. But praying constantly that he would not. He isn’t. I do not personally have a child with EB. My daughter is a carrier with symptoms like some pitted nails and dental hypoplasia, she is having her top four front teeth pulled and two molars crowned a week from today actually under general anesthesia. She is only two years old. She will always have her manifestation of this disease.

 

My dream for this campaign is that twenty years from now my children won’t be sitting there typing what I am today, only to go through what I have gone through. I am getting my tubes tied. I am 23 years old. I have beat the odds twice with EB and I cannot fathom risking the chance of having a child affected with HJEB. I can’t put my other children through that. I can’t put my husband through that, and I can’t put myself through that. Knowing that the odds are against me, it would be a horrible thing for me to try to have another child. No matter how badly I would love to have a big family, EB won’t allow it. EB is not fair.

 

EB does not discriminate. EB can be dominant, it can be recessive, or it can be a spontaneous mutation. It can be mild, it can be severe, or it could be lethal. I grew up looking at photo albums of my aunt that passed from HJEB and I remember crying as a little girl, looking at a bloody, blistering baby girl’s photos and feeling compelled to help her. I could not help her, but maybe I can help others. For all of the families with relatives that have passed due to EB, live with EB, or are risking a pregnancy that can end with EB, I pray for you. I want this to end. I want these precious butterflies to stop suffering. I want the family members to stop crying themselves to sleep knowing that there is no cure, and I want science to know that we are done. We are done with EB. We want it to go away and never return. We want to #stopEB!

 

One mom’s mission to help those with Epidermolysis Bullosa

One of the things that I love about this community, is the way that everyone comes together to support each other and how we work together rather than against each other. We all know that this is not a competition, rather it is a collaborative effort. We are all in this together and I am always so honored to be able to work with such an amazing group of people. One of these people is my friend Mandy Sink. Her daughter has ignited her passion and dedication to this community. She is so grateful for all the support that she has received, that she wants to do her part in giving back, here is her story.

468172_10151923606503378_67691980_oIt is, and always has been my passion to be an advocate for those in need. I started my career as a Special Education teacher, mainly working with children with Autism, and I transitioned into a career providing support to teachers across the country as an educational consultant.

However, I never prepared myself to be an advocate for my own child. Throughout my pregnancy I worried about every possible complication, and disability.  A midst the anticipation of a new child, I never spent any time or consideration worrying about rare diseases.

Nine months later, my daughter, Adley was born with Epidermolysis Bullosa, or EB.

It is called “the worst disease you’ve never heard of,” and I completely agree.

IMG_7208EB only effects 1 in 50,000 births in the US. I spent most of my time worrying about Autism, as the odds of that are approximately 1 in 88.

I remember how eager our dermatologist was to give us the news…….. EB Simplex! It was so difficult to find any joy in the results. I was so hopeful that the diagnosis would be that my baby did not have a life-altering, genetic skin disease, which will cause her pain every day.

IMG_7406Every day is a learning experience as a mother, and Adley is the most amazing teacher.  In just a short time she has taught my husband Aaron, and I so much about her and her needs, and also about each other as a family.  My love and respect for Aaron grows each day as I watch him love and care for Adley’s every need.  Aaron’s love, support and enthusiasm is also, what keeps me going.

There is a fine line between raising awareness and exploiting your child.  Because Epidermolysis Bullosa has no cure, I feel awareness is the most important thing I can offer Adley right now.  With the help of I Refuse, and friends in the printing business we made up cards with Adley’s picture, and information about EB on the back.  I have also created a website to help friends and family connect with information about EB and it also spared Aaron and me the emotions of retelling Adley’s story repeatedly.  You can visit her website at http://mandykuts.wix.com/adley

When Adley was about five months old, I was connected with The Butterfly Fund on Facebook.  In connecting with Laurie Sterner, Adley received a beautiful care package from The Butterfly Fund.  I was so inspired that someone could put so much heart into a cause.  I was even more touched that the Butterfly Fund sent the gifts to make Adley comfortable and happy.  I learned that the Butterfly Fund has a birthday club, and they send gifts to all of their ‘butterflies.’

1085107_10152152412518378_100616662_oAfter very short consideration I decided I wanted to give back to the Butterfly Fund, because their gift was the first EB related thing that brought happiness to our lives.  I love to host parties so I decided I would host an awareness raising event, called “The Butterfly Bash,” since the Butterfly Fund’s annual event is called “The Butterfly Ball.”

I began coordinating with Laurie, around December.  Planning the Butterfly Bash has been a way for me to associate very positive energy with EB.  In the planning process I have met hundreds of new resources in and around the EB community; I also have become rejuvenated and inspired by humanity again!  The generosity of strangers, and peoples’ curiosity and compassion has made it much easier to talk about EB.  As I mentioned, I have a hard time distinguishing awareness, and exploitation, you can tell people about Epidermolysis Bullosa, but in reality, until you show a picture of your baby’s wounds do people really understand.  Talking about The Butterfly Bash, is a way to spread awareness, and ease my anxiety about talking about the EB that affects my daughter.

Everyday I meet new people and generate fabulous new donations for our upcoming event.  I am inspired everyday by how many people want to learn more, and want to help!!  The Butterfly Bash has evolved from an idea, to a typical benefit style event, to an ALL DAY, TWO EVENT true BASH!  In the afternoon we will be hosting a family event, with Mini-golf, Face painting, Bake Sale, Butterfly Costume Contest, Carnival games, raffles and more….  In the evening will be the Main Event, complete with buffet dinner, bar package, door prizes, raffles, stand-up comedians, live bands, and adult Butterfly Costume Contest, in which the champion will go home with a very impressive trophy.

As October fast approaches, I am most excited about meeting all of my new found “family” members from the EB community.  The Butterfly Bash, being somewhat centrally located in the US, is providing many families and advocates an opportunity to get together and meet!  I never imagined this would take off the way it has…..  I had only hoped it would ease my pain, and in fact it has done that and much more.

I am so very thankful for all of the support!

Peace, Love, Cure!

You can also stay up to date by joining the FaceBook event The Butterfly Bash 

Doing what is right, for the right reasons…

imageSo many things in life do not come easily…we are often faced with many challenges and obstacles.  However, it is within our power to overcome; to not give up.  Sometimes, we just need a little reminder to let us know it is worth it.

Tripp Roth 10-21-2011 (49)When I began on this journey, I put
everything that I had into it.  It was something that I undoubtedly became very passionate about.In all reality, it was not hard to be so inspired and motivated.  It came relatively easy and I never once thought about what my life would be like two years later.

It has become a labor of love…something that is hard for me to describe.  However, I have

PCC123-3-2027055017-O found that when you put your whole heart into something, it can often times be very challenging.  Not everyone will understand or agree with it, not everyone will believe in your intentions and there will be times when negativity creeps in and you ask yourself if it is worth it, am I truly making a difference?

When you put yourself out there in a public way, you must expect that you may be scrutinized, however I never considered that.  I never thought about the fact that there would be negative comments or that there would be people who were against what I was doing.  I knew what I felt in my heart and I just went with it, it was the right thing to do and that is all that really mattered to me.

Eventually, I was more than aware of the negativity that existed and I as much as I hate to admit it, I began to lose focus and I started to worry more about others perceptions.  My skin was not as thick as I had hoped it would be and it was hard not to take criticism personally.  This was not the path I wanted to go down and yet I found myself right in the middle of it questioning myself.  The problem was, I was asking the wrong questions.  I needed to remind myself of the “why” and stop worrying about the rest.  I needed to remember why this all started and where it came from.

Why?  Why is this so important to me?  It is important to me because I want to help 1098010_10151586928332810_1327822445_npeople; make a difference.   I want to share stories of triumph, stories that inspire.  I want to honor those who fight and remember those who are gone.  I want people to be educated and aware.  But, you know what I want more than anything? I want to watch Jackson, Anton, Blake, Melina, Eli and all of the kids I have come to know and love, run and play without worry.   I want them to be kids, kids who are not stared at or whispered about.

I want to watch my friend Charlie graduate from high school and go on to achieve great things!   I 1016264_10151528369917810_413149640_nwant to see my friend Rachael continue to achieve her dreams.  I want those with EB to be free of the bandages because in my heart, I believe that everyone deserves a life without pain.  I want to see success instead of sorrow.   I want a cure. 544477_10151586953952810_2126023633_n

This is what is in my heart and it has been there all a long, I just needed a reminder of why I do what I do and why I need to look beyond negativity and do what is in my heart.  And I got that all because of a little kiss…thank you Charlie.  (And Jackson too!)

So, my point is, I know it is not always easy to do the right thing when it feels like it is the unpopular choice.  Your heart knows better than any naysayer, and it will lead you on the path that is right.

Regardless of what others say, do what you feel is right.  You can do anything you put your heart into. It is worth it…there is no doubt about that!  I have seen it over and over and it is the most beautiful gift we can give others and ourselves.

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It was Time to Fly and we FLEW

In our lives we are given many different opportunities; opportunities to help, opportunities to encourage, opportunities to be inspired and opportunities to help make a difference in the lives of others.  These last few months I was fortunate to have been presented with many of these opportunities multiple times as I prepared for this year’s Time to Fly event…it was certainly more than I could have ever imagined.

I set out this year with the hope that I could build a great team who would come together to help raise awareness for EB as well as funds for research.  What I got was something far more than that!

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Over 100 (114 to be exact) amazing people from all over the United States came together to form TEAM PUCK and together we helped raise over $34,000 for EB research.  It was nothing short of AMAZING!  As the team captain, I was so moved by the support and dedication of my team.  I am so incredibly grateful and I THANK YOU!  I have been inspired beyond words!

Again, I just want to give a heartfelt thank you to all for making each step count…for taking a chance and helping me.  Our team accomplished great things and it was because of your hard work and your support that we were able to surpass all of our 2012 totals.  So many of you you accomplished your own personal goals and for some this may have been your very first run.  Be proud, be very proud, for you are destined for great things…each of you has a passion that shines and I had the chance to see that.

I would also like to take a moment to thank all of our MANY supporters…they are far too numerous to list, but know that your support has been amazing.  Our fundraising efforts are successful because of your donations and constant encouragement. To those who helped through promoting and purchasing I Refuse EB merchandise, thank you for continuing to get the word out about EB and educating others…you are all AWARENESS SUPERSTARS!

So, for TEAM PUCK and our supporters…

Continue to be amazing…next near we will ROCK IT AGAIN!!

 

 

 

 

 

 

 

 

 

Fourth grader is an inspiration to her classmates

DSCN0240 (2)Many of us spend years trying to find a cause to move us to action, and we strive to make a difference.  Well Kaelin Thomas is doing just that!  At only 10 years old, Kaelin is making a difference in her community and beyond.

After learning about EB and how it affected those who face it each day, Kaelin felt a very strong call to action.  She wanted to help educate others in her community about EB and the organizations who support families and research.  As a member of the Elementary Honor Society, she had a opportunity to present to the Student Council, an opportunity to teach her peers about EB and hopefully inspire then as she has been inspired.

She has achieved this and more.   Kaelin has sparked passion in her classmates to become part of something bigger then themselves.  There are now several fundraising efforts within groups at her school and students are out educating others.   Her presentation powerful and she now has the opportunity to present to the National Elementary Honor Society, which will hopefully open more doors for her and provide her with more opportunities to help others and make the world a better place.

I am so incredibly proud of Kaelin and her passion.  She is making such an impact in her community and in the EB community as well!  She is teaching those around her some of the most valuable lesson in life.  She will do great things in her life, I have doubt.

Here is her presentation to the council…

 

Why I Refuse

Good Morning!  Since we are coming to the end of the Student Council run, I wanted to talk to you about a great organization called I Refuse.  We all know about places who help raise money for kids with cancer and other well known diseases, but I wanted to tell you today about a rare disease that not a lot of people know about.   I Refuse was started by Christie Zink in Minnesota.  She is a photographer who started to take pictures of small children that were born with a disease called Epidermolysis Bullosa, or EB, which is easier to say!  This is a rare disease that causes a lot of pain and is eventually fatal.

EB means that the protein that holds the layers of your skin together are missing when you are born.  This disease is genetic, so you are born with it, you don’t get it later in life.  So, say someone grabs your hand or you brush up against a desk or wall.  Normally nothing will happen to your skin or maybe you might get a bruise.  If you have EB, you skin would tear or blister and it wouldn’t heal for a long time, if at all.  You would be at risk for bad infections.  Your skin would have to be constantly covered in bandages.  You wouldn’t get to play like a normal kid.  EB causes other problems too.  Blindness and cancer are common in EB kids.  It is really sad.  EB kids are often called “Butterfly Kids” because their skin is as fragile as a butterfly wing.  The slightest touch can cause a lot of damage.

The good news is that there are doctors who are finding new ways to help kids with EB.  This is where the I Refuse Campaign helps out.  In Minnesota, Dr. Jakub Tolar is researching and testing new ways to use bone marrow transplants and stem cells to help out kids with cancer and EB.  He never quits trying to find a way to cure EB.  He relies on the donations he gets for research.  P.U.C.K (Pioneering Unique Cures for Kids) and I Refuse donate a large amount each year to help find a cure for EB.

Please look at my board here.  These little kids are a small example of the kids who have fought hard against EB or who are still fighting EB every day.  Look how small they are. I wanted to bring this to your attention because we need to let people know about this disease and how bad it is.  We are the future doctors and scientists and we need to find a cure.  We can make a difference in the lives of all EB families and it will also make a difference in each one of us.

Since the end of the year is coming up, I hope we can spread awareness about EB and maybe find a way to support the I Refuse campaign to help these kids.  They deserve a chance to do what we do every day, play and run and hang out without being afraid they are going to get hurt or even living long enough to do these things everyday.

Thank you for listening!

So Kaelin, kudos to you, I cannot wait to meet you!!  Keep up the amazing work you do, you are going places!!

Kaelin and her family will be taking their family trip to Minnesota in June to participate in Time to Fly.  You can help Kaelin in her fundraising efforts by clicking HERE

Rare Disease Day – Spotlight on Harlequin Ichthyosis

In the U.S., any disease affecting fewer than 200,000 people is considered rare. This definition comes from the Orphan Drug Act of 1983 and is slightly different from the definition used in Europe. There are nearly 7,000 rare diseases affecting nearly 30 million Americans. In other words, almost one in ten Americans are suffering from rare diseases.

Besides dealing with their specific medical problems, people with rare diseases struggle to get a proper diagnosis, find information, and get treatment. The rarity of their conditions makes medical research more difficult.

(From RareDiseaseDay.US, please visit there site for more information: RareDiseaseDay.US

Epidermolysis Bullosa is only one of the many disorders affecting the nearly 30 million people suffering from a “rare” condition.  Another one of those very rare conditions is Harlequin Ichthyosis.  According to the Foundation for Ichthyosis and Related Skin Types,

Ichthyosis is a family of genetic skin disorders characterized by dry, scaling skin that may be thickened or very thin. The prefix “ichthy” is taken from the Greek root for the word fish. Each year, more than 16,000 babies are born with some form of ichthyosis.  Harlequin ichthyosis is an extremely rare form of ichthyosis and is the most severe. 

Newborn children affected with Harlequin ichthyosis are covered with plates of thick skin that crack and split apart.  The thick skin plates can pull at and distort the infant’s facial features.  The tightness of the skin pulls around the eyes and mouth, forcing the eyelids and lips to turn inside out, revealing the red inner linings.  The chest and abdomen of the infant may be severely restricted by the tightness of the skin, making eating and breathing difficult.  The hands and feet may be small, swollen, and partially flexed.  The ears may appear to be misshapen or missing, but are really fused to the head by the thick skin.  Harlequin infants need to be cared for in the neonatal intensive care unit immediately.  (You can find out more by visiting their site: www.firstskinfoundation.org)

Through the wonders of social media, I have come to know a sweet little girl named Brenna.  Her mom Courtney says:

“When our daughter Brenna was born and diagnosed with Harlequin Ichthyosis, I was unaware of all of the health risks that having a skin condition posed. I simply thought she would look different. I very soon discovered how severe and life-altering this disease is.
Harlequin affects our family every day – from the daily baths that require extra time in the tub to soak and exfoliate excess skin, to applying Aquaphor up to 6 times a day covering Brenna’s entire body, to nutritional concerns (making sure she’s getting enough calories and gaining weight) to minimizing infection risk through hand-washing and liberally using a bleach solution when cleaning.
I began my blog three days after Brenna was born to both update family and friends about her condition and to share about Harlequin and all that it entails. But that soon led to advocating, not only medically for Brenna, but for all who are different. Sharing our story has not been without criticism and judgment…but it is worth it every time our family is out in public and we get stopped by strangers exclaiming over meeting Brenna – sometimes with tears in their eyes – instead of the alternative: pointing and staring and whispering about her unique physical appearance.
Society tells us every day that Brenna is not perfect or beautiful. But for those who know her, she is changing the perspective of beauty with all that she has accomplished with strength and determination. We feel blessed beyond measure for all that she has opened our eyes to and for the love she has brought to our lives.”

Brenna’s journey is one that will inspire and move you, you will fall in love with her, there is no doubt.  Take some time today to read more about this very special little girl who is such a blessing to those who have come to know her story. You can find out more at Courtney’s Blog Blessed by Brenna or by visiting Brenna’s Facebook Page 

Please help raise awareness and support Rare Disease Day, by sharing this blog to help educate others.  And as always please support research to find cures for these disorders.  You can find out more about Harlequin Ichthyosis or the other 28 types of Ichthyosis by visiting 

And the winners are…

There are nearly 7,000 rare diseases affecting nearly 30 million Americans. In other words, almost one in ten Americans are suffering from rare diseases.  Besides dealing with their specific medical problems, people with rare diseases struggle to get a proper diagnosis, find information, and get treatment. The rarity of their conditions makes medical research more difficult.  I hope that you will join me and other advocates as we recognize Rare Disease Day 2013 on February 28, 2013.

Thank you to everyone who participated in our Rare Disease Day Giveaway on Facebook.  Due to the overwhelming response, several other prizes have been added.  You can view the winners by clicking the image below.  If your name is listed, please email irefuseeb@gmail.com with your shipping information within 48 hours, prizes not claimed by Monday at 9:30 pm CST will be re drawn.  THANK YOU!!

 

Remembering Tripp Roth

I wanted to share the blog post that I wrote for This Little Light in memory of Tripp Roth as he was such a large part of the inspiration behind this entire project.
08-9-11
Today a little butterfly flew by me.
I thought to myself where have you been little butterfly.
You come into this world as a cocoon all by yourself and blossom into
this beautiful butterfly and fly off to see the world.
What you don’t realize little butterfly as you flutter through your days
is how you touch those around you in your soft gentle way.
You don’t even realize the wonder and awe you create around you.
He fluttered his wings toward me as if he was waving good-by as he
headed towards the horizon.
He looked very happy and content as he went on her way, as if to say
to me “Don’t worry I’ll be okay”.
I was sad to see him go for he had touched my heart in such a way that
I knew my life would never be the same.
He had left an imprint of all the beauty life has to offer.
I knew each time I looked at another butterfly or horizon I would
remember our moment in time when it was only him and I.
I knew I would be a better person all because this little butterfly flew by
me one bright sunny day.

© Barbara Ann Rogers

Tripp 2Interesting how we get what we need just when we need it, little signs that come just at the right time.  I had been thinking long and hard about writing a post to honor Tripp Roth today.  The words were not coming to me as easily as I had hoped and I was totally unprepared how emotional I would be trying to write about him today.  I thought I would search for a quote to help me get started and so I did a quick Google search, hit enter and went to get my coffee.  This is what was waiting for me when I got back to my desk.  As I read, the tears came to my eyes, for I knew that he was speaking to me and guiding me as he did so many times during his life.  It was exactly what I needed and exactly the right time.

Many of us search our whole lives, seeking our purpose, and I was blessed to have found it in the incredible life of a little boy.  It was again what I needed right at the right moment, a simpleOct 21 2011_0262BW mouse click on a link and I was forever changed.  It was a gift that humbles me each and everyday.  I know that I am a better person today because of him and everything I do is because he came into my life and changed it.  He gave me the purpose I had so long been seeking.

I am only one of many who has been impacted in some way by Tripp’s life.  Through his suffering, he taught many about courage and faith.  Despite the challenges of life with Epidermolysis Bullosa, he taught all about love and gave people hope.  He has left a tremendous imprint on the hearts of many, and even in his absence, he is changing lives through his story.

 

Tripp Roth 12-2 thru 12-3-2011 (36)A year ago today, the news of Tripp’s passing shattered many of us.  The loss of this beautiful spirit rocked the EB community and the entire group of supporters who had been following his journey and praying for him.  I am one of many who never wanted him to leave and now he was gone…or is he?

I don’t think so, I think that he lives on in all of the work that we do each and every day fighting for those with EB.  I think that he continuously graces us with his spirit, inspiring us to continue to advocate and fight…to be a voice to all of those who suffer.

Today more people know about Epidermolysis Bullosa than ever before. There are advocates across the country who are raising awareness, people who are dedicated to finding a cure and end the needless suffering.  This is not a coincidence, it is the spirit of one very special butterfly guiding us on a path of compassion and love; helping us to be better people.

Today my heart is with Courtney.  So many of us have been inspired by her unconditional love, her unwavering strength and commitment to her son.  Courtney,  thank you for sharing Tripp with the world, for trusting us to love him too.  Thank you for facing criticism and negativity so that we could experience the many blessings and the joy he brought.  Opening yourself up to us all so that we could share this journey with you.  I love you today and always my sweet friend.  Please know that Tripp is our hearts always; his spirit still shines.

 

Tripp Roth 10-21-2011 (49)In parting, God said, “Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed.” Thus at that moment the brave little soul was born into the world, and through his suffering and God’s strength, he unlocked the goodness and love in people’s hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys, some regained lost faith – many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased. – an excerpt from The Brave Little Soul by John Alessi