Behind the scenes of EB.

I can't believe EB Awareness Week is over already.  I sure dropped the ball this week, but NOT YOU GUYS!  You have all been so amazing in helping us spread the word about EB.  I hope that it doesn't end here and that you will all still continue to be advocates for Tripp and for all the people living with EB.  

 I haven't blogged about what's been going on with Tripp because it's been kind of rough around here, but I promise I will soon.  He had a really tough week in the beginning, but the past 2 days have been a little better.  But in honor of EB Awareness Week, I want to this post to focus on people who have helped us and other families through this difficult journey.

I want to take the time to recognize these people/foundations that sometimes go "unnoticed" in the EB world.  These are 3 women who are very dear to my heart- and I've only had the honor of meeting one of them, but one day I will meet the other two... I am positive.   These women may often get caught behind the scene, but without them... many EB families would not receive the support and care that they need and deserve.  These are people that deserve recognition for their hard work and dedication to the EB community.  

Mrs. Laurie Sterner and 

The Butterfly Fund:

http://www.thebutterflyfund.org

Laurie Sterner~Founder, Executive Director

Allie Sterner~President

Michael Sterner~Vice President, Secretary

Board Members~ Steve Thrasher, Jim Fewell, Liana Fewell, Jannette Braa, Karen Battaglia, Claire Murray         

    

The Butterfly Fund is dedicated to helping EB families and now also families who have a child diagnosed with any serious life altering disease.

 100% of the proceeds of their events & donations go directly to family assistance in the form of financial aid,  food, housing, clothing & care.

Absolutely NO salaries are paid.

They are not federally funded or grant funded, so the amount of funds relies solely on donations from kind businesses and individuals. 

The Butterfly Fund does not discriminate.  Anyone and everyone who has a child with a serious illness may inquire with them. 

100% of the money they raise at their Annual event- The Butterfly Ball, gets allocated to as many families as there is money.  

They give every bit of the profit away.

This fund has reached out to us and is still reaching out to us on MANY occasions.  

Here are some examples of the services they have done:

-They provide Kicky Pants clothing for many families with EB (they've given Tripp MANY of his shirts- which are VERY expensive and SUPER awesome!)

-For 4 years, they have been paying a large share of the rent & living expenses for a local young man who has EB and they hold a special annual event just for him…sometimes more than once.

-They have bought much needed baby items for a family who's baby was born with MS

-Have given gift cards to a family whose baby was born with CP

-Sponsored a companion dog for a young girl with EB

-They bought a car and other items for a young single Mother whose son has EB

-Have given funds to approximately 15 families, with an array of catastrophic illnesses.

-They sponsored Aubrey’s 5K and Tim Ringgold’s various events and fundraisers

-They sponsored a young boy in Sonoma who was in a serious car accident/volunteered at his event

-Helped purchase bandages for Raul, who has EB and was living in an orphanage

-They sponsored a young man who is paralyzed and has brain damage

-They've helped a family financially who had a young boy with a brain infection

-They've donated Art supplies to Camp Wonder

-They honor 2 families every year at their annual Butterfly Ball – tell their story and if need be, help them financially.  These are families who have or had a child with a catastrophic illness or event.  

*1st Annual Butterfly Ball*

Cody Cordellos- a young man who has no family support live a better life.

The Shiery Family- 5 year old daughter, Rachel died from Brain Cancer

*2nd Annual Butterfly Ball*

The Spaulding Family: honored Garrett who has EB

Anim Vinson Family- Honored Her son William who has EB

*And this years honorees* 

The Pop Family who lost their daughter Elle last year to EB

And The Kragler Family whose newborn daughter's delivery at birth caused lack of oxygen and she now has CP. She is 3 years old and cannot walk or talk.

-They attend other fundraisers for children and support them financially

-They have helped the Cannell Family in the adoption of their 2 boys by raising awareness and funds.

-They raise awareness for EB any chance they get, including having a booth at very well attended Art shows and events.

-Mrs. Laurie's daughter, Allie owns a retail children’s store and she is constantly having items for sale that raise awareness for The Butterfly Fund and EB at the same time.

-They buy Christmas presents for families who have children with catastrophic illnesses that otherwise could not afford them!

Please visit their website and see how this family of angels work so hard to help other families who are in need.  They don't get enough recognition for what they do.  

Thank you Mrs. Laurie, Allie, Mr. Michael, and all who work hard to make this fund possible.

Mrs. Leslie Radar

I will never in my lifetime forget Leslie Radar.  

She was the first mom (and really the first "EB experienced" person) that I spoke with after Tripp was born.  Her daughter, Lauren lost her battle with Junctional EB at just 7 months.  She was my support when I received the news that Tripp was diagnosed with "Junctional" EB.  

She was so helpful, so brave, so understanding, and such a great listener.  

She helped me to get started and get on my feet with everything that I needed to properly care for Tripp. 

She is another amazing person that I have yet to meet face to face.

After her sweet daughter Lauren received her angel wings, Leslie started the New Family Advocate Program with DebRA.  She joined the DebRA Board of Directors and she organized the Wound Care Clearing House in her own home (but it is now being run through DebRA office).  Then, she joined Hollister Wound Care as the Coordinator of EB affairs.  Hollister is very compassionate and supporting of the EB community. They are always striving to make wound care products that improve quality of life by having comfortable dressing that are virtually pain free to remove.  Leslie makes personal visits to the homes of families with new EB babies.  She continues to help EB families with all wound care product questions, insurance issues, and tips and suggestions on how to use products.  She informs families of EB friendly shoes and clothing, and assists new families to network with other EB families and social media sites.

Leslie likes to be "behind the scenes."  But I think she deserves a tremendous amount of recognition.  There is NO better support than a mom who has been through the exact situation that you are in.  Leslie has dedicated her life to helping other EB families.  Thank God for people like her who use their experiences to help and educate others. 

Thank you, Leslie.  You're my hero. 

Ms. Geri Kelly-Mancuso

Geri is the EB Nurse Educator for DebRA of America.  

Ms. Geri will forever hold a very special place in my heart.  She was there from day one (she talked to my dad a lot in the beginning when I was in "shock,") but then she and I communicated on a regular basis.  She sent us out care-packages right away when Tripp was born.  She was always available when we needed her and she actually came to our house for the new patient visit when Tripp was about a month old (Mrs. Leslie Radar wasn't able to at the time) and spent the day with us, talking and sharing information that we needed to know.  Geri is essential in the EB community.  She is very knowledgable about EB and will work hard in every way possible to help in whatever way she can.  Whether it be communicating with doctors/patients across the world or just lending an ear when you've had one of "those" days.  She is amazing and will be a friend of mine for the rest of my life.  

Thank you to EVERYONE who works "behind the scene" or not for our family and all the EB families.  I know I speak for all of us when I say that we truly appreciate what you guys do.  

We are blessed to have you ALL in our lives.  

Love,

A surprise from our favorite furry friend, ELMO!

Elmo wrote Tripp another song... HIS VERY OWN personalized SONG.  

I'm such a proud Momma, 

and just when I think that I couldn't love Elmo (Kevin Clash:) any more- I receive THIS CD in the mail today--

And here is the song- 

I added the pictures because I didn't know how else to share it from a CD other than creating a movie/slideshow.  

Tell me that is not the sweetest thing you've ever heard? 

He is playing the drums with my little man- and then pausing so Tripp can drum to the beat! 

Amazing.  Tripp loves it- but it's going to take him a few days to be able to play along, I think:)

He's good, but not that good!  So be patient and hopefully I can catch him on video drumming along with ELMO to his VERY OWN song!  

We love you, Elmo.  You are the BEST. 

I want to send a very very special thank you as well to Elmo's assistant, Kimi for keeping contact with us and always trying to make our days special and also JP, Katherine, Ralph, and Louis for putting the cd together for us- the graphics, lyrics, etc!  You guys on Sesame Street are the BEST:) 

I wish Tripp could meet you all and drum for you! 

Oh and don't miss my new post below this one!!

Two posts in one day?!  Record.

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Love,

Trimming Tripp's Tree and Personalizedfree.com

I received an email the other day from the Public Relations Consultant from the website 

www.personalizedfree.com

and she made us a very thoughtful offer.  She said that their company would be willing to donate 10% of their proceeds from now until CHRISTMAS to DebRA when you place your order using the promo code: TRIPP. 

Their website is FULL of thousands of personalized Christmas ornaments and pictures.  Practically any theme you can imagine:  Family, 1st Christmas, Occupations, Pets, Hobbies, Sports, etc.  They are reasonably priced and ship worldwide!! 

They also recognized Tripp and me on their blog for the website, helping us bring awareness to EB! I am going to post their link on my sidebar, so that you can easily access their website if you choose to help!

Or you can visit their site HERE and the blog they posted about us HERE.

 I am so grateful to them and I wanted to work hard to be able to give this company business, also raise money for DebRA... BUT ALSO... I'm going to be a little bit selfish, too (GASP).  I can't help it.  Here is a proposal:

My mom, Christie Zink (our superwoman advocate and supporter from Minnesota) and I, came up with what I think is a FABULOUS idea.  I hope you guys will agree.  

This year for Christmas, we want YOU to 

"Trim Tripp's Tree." 

We are going to put a Christmas Tree behind Tripp's rocking chair in the corner of our living room this year.  I want to decorate it with ornaments from everyone (no matter where you are) that follows our story and prays for my little Drummer Boy.  These ornaments will be something that I will TREASURE every single year, no matter what happens in the future.  Something that will have SO much meaning and will be so very special to me.  So I can always remember all of the support that we've had through everything.  

You all know that it's hard for me to ask for something for myself- but I figured that this would be the perfect opportunity to raise money for DebRA, give business to a company that wants to help us, and also make Tripp's Christmas tree this year the most special Christmas tree in the world.  

You can put your name, your state, city, or a special message to Tripp if you'd like:)

Now, you DO NOT have to buy an ornament from personalizedfree.com if you do not want to.  You can order from anywhere you want OR you can just make a homemade ornament!!  No matter where it comes from, it will be SO special to us!  

I can't wait to share pictures of our tree with you all this year!!

If you want to join in the ornament fun, you can mail them to us at:

18669 Sisters Road

Ponchatoula, LA  70454

Ok, so I hope no one thinks I'm being pushy for asking this- I mean, you guys have already gone above and beyond for us in SO many ways.  I just wanted to throw this idea out there, in case anyone wanted to participate- and Christie has also created a Facebook page event called "Trimming Tripp's Tree." 

You can visit the page HERE.

We love you all!  

Thank you again for being the best support team and prayer warriors we could EVER ask for:)

Love, 

Welcome EB Awareness Week!!

So I'm a day early, but I'm way too excited to wait. 

So are you ready to Be Part of the Cure??

This week is not just about Tripp. It's about everyone who is living a life with EB and their loved ones.
All of you know how sad I feel for Tripp and how much I wish I could take this from him, but what about the others?  The children, teens, and adults living with EB who ARE actually able to "go out into the world" and have to function in an every day life with EB.  Maybe the ones who get stared at, ridiculed, and get treated differently because of the way they look.  Those who want to stop the person who stares at them and try to explain their world of pain- but never have the chance to because no one cares enough to take the time to listen.

I want that to change.  And in all honesty- not only for EB- but for every disease and disorder out there. Who are we to judge? Who are we to stare? Just because we are healthy, does that mean we are perfect? Does that give us the right to think that we are better than anyone else?

I'll be honest, I often times think that we have the worst of the "EB" world... Because of the fact that Tripp has suffered through every possible affect of this disease- the trach, the feeding tube, the corneal abrasions and eventually losing his vision, the mouth sores, constant infections,  etc etc.  But when I really stop and think about other kids and adults living with EB, I know that every one of them is carrying a horrifying cross, each in a different way.  I often wonder if we are blessed that Tripp doesn't have to worry about what others think about him- because he doesn't know better yet (not saying that will never happen, but at this moment). I think about the school-aged kids who live with this disease every day and have to worry about what people think every time they walk out of the house. Or the adults who have to function in the "work" world and in the "real" cruel and judgmental world.  Do those people have a community of support and people rallying for them as well? If not, can you imagine their pain?

This is the worst disease in the world- and no person, child or adult, should have to suffer like this- physically, mentally, or emotionally.

I want every person in the world to know what "EB" is.  I want them to see someone with EB and say, "God bless you," or "Can I help you?" instead of sitting back and staring.  We all need to be educated.

Just like every disease, these children and adults did not choose this- they were chosen... whether they wanted it or not.  And it's something that currently has no cure and is not going away.  What are we going to do about that?

So please don't sit back (like I did before Tripp) and think that you are exempt from having a baby with a disease, a defect, or a disorder.  No one is exempt.  And if it didn't happen to you-  congratulations.  But what if it was to happen to your child's child?  Or a best friend's child, or just someone you know?  It would be devastating, right?

Our family has been abundantly blessed with support, kind thoughts, prayers, and fundraising.  We are forever grateful for this- more than I will ever be able to explain.  So since we have been blessed beyond words, it's my job to bless others- my job to help others.  Those who don't have a voice. Those who are living with EB who don't have the support that we have. Those who want people to know WHY they have sores and bandages all over their body.

I won't stop- not this week, this month, this year, or in my lifetime- spreading the word about this horrible disease and doing what I can to make the lives of these children and adults a little easier.  I'll do it for Tripp, for those who have lost their precious lives too soon, for every single person currently living with EB, and for every child that will be born with EB in the future.

Whether they are fighting to survive just one more day physically, or fighting to survive one more day mentally.  Every one of these children and adults deserve to be heard and deserve their voice to be heard. So please... Find someone who will listen- tell them about EB- and tell them to tell someone else about EB.

And no matter what happens, I will keep fighting.  And I will encourage you to fight with me.  I encourage you to be a part of something bigger, something worth bragging about. Something that makes you feel good. Help us... help all of those with EB.  Be a voice for someone who doesn't have one, for someone who never had the chance to have one, or for someone who is aching for the world to recognize them for who they are and not "what's all over their skin."

How can you help?
"EB" a part of the Cure by joining the Facebook page HERE.
Create your own awareness page.
Post about EB on your Facebook page or blog.

Share the awareness video at the end of this post.
Educate yourself about EB (Debra.org is a great way).
Simply tell another person about EB.
Educate your children about EB so that they will be able to recognize it.

And like I said, we have been blessed beyond comprehension- and Tripp has obviously helped spread the word about EB in his two and a half years. So let's continue... Let's fight for those with EB...  Whether they are close in your hometown, across the world, simplex, Junctional, dystrophic, newborns, children, or adults... They ALL deserve this.  Please help me give those living with EB a voice and a chance for a cure.

I have never once asked any of you for money, but this was too brilliant to pass up- and there is no better time than now.

I know a lot of you know about the Bone Marrow Transplants that are going on in Minnesota, and how dangerous they were for babies under 1-2 years old.  These transplants took the life of some of these children, whose parents were hoping for the best.  Sweet Bella was one of those children.  Her parents, Tim and Angelique, are working hard with the team of doctors in Minnesota, trying to raise much needed funds through PUCK (Pioneering Unique Cures for Kids).
The doctors in Minnesota have changed the transplant regimen in the past year.  They have made it safer for these children and for these parents who want a better quality of life for their children.  There is still no cure.  But they are working. They are trying. These doctors are fighting for our kids.   You can visit this website to find out more about this research:

www.puckfund.org
And here is what Tim proposed to me for this year's EB Awareness Week: 

A Text for Tripp

I thought this was awesome.  I mean, how many of us text like crazy people? I know I do!!  It's SO easy- all you do is text TRIPP to 50555 and a donation of $10 will be added to your wireless bill going straight toward EB Research through the Minnesota Medical Foundation at the University of Minnesota.  Cool, right? $10 a person can go a long way!! And you don't even have to take the time to pull out a credit card- it just charges straight to your wireless bill and does the work for you!!  Brilliant, right? Let's do this!!

Text Tripp to 50555 and help us END EB NOW! 

And then SHARE this video as much as you can to help us spread awareness about these beautiful children!

Love,

Dragon Mom

I've been getting several messages about an article in The New York Times titled "Notes from a Dragon Mom," so I had to share. I could not have said it better myself. Our situations are different but oh, so similar. I wish I could hug this Dragon mom and thank her for giving us moms a voice.

Please read her story HERE.

Update, Reader's Digest, and EB Awareness

A lot has happened since the last time I posted, so I will do my best to catch you guys up.  

Since the night that I posted all of those videos, Tripp has literally had a good day, then a bad day, then a good day... etc.  I'm in the process (along with Dr. D and Trea, our super fabulous pharmacist) of trying to switch some of his medicines.  Within the past week, I've tried some new antihistamines to help with his itching.  O my GOODNESS, the itching has been horrible.  This poor child just never ever gets a break.  So, the antihistamines are brutal.  He was literally gasping for air about 30 minutes after I gave him the new medicine and it lasted almost all night long.  It's like it dried him up completely so that he couldn't breathe.  That was a horrible night.  So I stopped all of the antihistamines altogether.  He's on a yeast medicine and a fungal medicine in addition to trying every topical itch cream that there is.  The itching has just started to be an issue this past month, and from talking to other EB moms or adults with EB... it's something that is ongoing and nothing really helps.  Great. 

So as far as the skin... the wound cultures came back growing (I'll give you one guess)....PSEUDOMONAS.  And guess what?  There are no oral antibiotics left that treat it.  So this was my decision.  I said I would try Rocephin injections (the pseudomonas was sensitive to that) once and see if they could bring his white count down enough to try the G-CSF.  SO- as of this morning, he's gotten 2 injections of Rocephin IM (Intramuscular).  They are only once a day- Thank GOD (because that's horrible enough) and it's for 7 days.  I'm giving the injections myself... something that NO MOTHER should have to do, but I wouldn't want any one but myself doing it.  They are rough- thick and 2 mls of fluid going into rotating thighs each day.  I'm glad we are trying them, but this is not something that I'm going to do again.  SO PLEASE pray that these injections will drop his blood counts so that we can try this G-CSF at least ONCE, so that maybe it will heal something and decrease his constant infections.  That is my goal.  Will will hopefully be re-drawing his blood work on Thursday or Friday to re-check his counts. 

Oh, and I forgot to mention the diarrhea, bellyache, the bruising of the site, and the soreness that come along with these injections.  This child is a saint.  I can't stress that enough.

Ok, so now for the shout out to my super awesome followers.  There is a contest going on for Reader's Digest.  If you win, you get your story published!!  How awesome would that be for EB Awareness?  Right now, our story is in 2nd place- and all of my Facebook friends have been so awesome about spreading the word to vote for us!  Thank you so much to all who have voted.  You can vote EVERY DAY from EVERY electronic device (computer, smartphone, iPad, etc).  So please, if you think about it, take a minute to vote so we can spread the word about EB in Reader's Digest!  It would be a great prize with EB Awareness Week coming up!  

You can click HERE to vote!

Speaking of EB Awareness, I thought of an idea to help spread the word next week.  Since Halloween is coming up and everyone will be Trick-or-Treating, I created a flyer that can be handed out!  You can either hand it to the kids (or maybe parents) of the Trick-or-Treaters that come to your house OR you can take the flyers with you when you go Trick-or-Treating and pass them out to anyone you see!  This way, we can "Trick-or-Treat for Tripp" across the country:)  Here is the flyer if you're interested:

I hope it works to where you can save it and print it out from the blog.  If not, let me know and I'll find a new way to share it:)  

I hope everyone has a great week! 

Love,

My Birthday Poem.

This is a poem that one of my Kindergarden teachers, Mrs. Elaine Landry, wrote for me on my birthday. 

Thank you so much, Mrs. Landry.  I will treasure it forever.  

My Dear Mommy, 

On May 14, 2009, you gave birth to a baby boy

You named me Tripp, your little bundle of joy.

I thank God for choosing, "you" to be my mother

I would not have wanted, not any one other. 

When you brought me home, that long awaited day

We had no idea, what was headed our way. 

You took me to doctors, both far and near

They said I had EB, and would not live a year. 

You proved them wrong, with your faith from above

I am still here, because of your "love." 

You are doing all you can, and so much more

To take care of me, and all my body sores. 

You stay awake both day and night

Just to make sure, your "Bubba" is alright. 

What other kid, has a McDonald's playground at home

Or a New Orleans Saints football, from the Superdome?

I want to tell, all my family and friends everywhere

I love them so much, and thanks for their prayers.

Thanks to my doctors, nurses and all who help you and I

I wish I could see each one in person, just to say hi. 

If in your sweet dreams, you hear music or drums

Then surly you know, who it's coming from. 

It may be an Elmo tune, or the LSU fight song

You know how I love, when you sing along. 

I love you Mommy, with my arms spread apart

If only I could show you, the love inside my heart. 

You know how kids, always wish for a toy

My wish is to have longer, just to be your Angel boy. 

You are right to say, that this was God's plan

So please keep rocking me, as long as you can. 

Thank my sweet Grammy, for always being there

Her devotion is like yours, is so very rare. 

Happy Birthday Mommy, you are so dear to me

I am lucky to have, the greatest Mommy, you see.

You want to know, if God is speaking to me

In your faith filled heart, you know He has to be. 

So Mommy be happy today, and say your favorite prayer 

For God said to tell you, you will get your "Pinky Swear." 

Love, Your Bubba

-Thessalonians 5:18

"In all circumstances give thanks, for this is the will of God for you in Christ Jesus."

Thank you, God, for the best couple of hours in a very long time. 

If it happens again tomorrow, I will give thanks. 

If it doesn't... I will STILL give thanks. 

This child is truly amazing.

He is my HERO. 

Riding Papa's Horsey

Tripp's song

Yawns :)

Love,

Picture Post.

SURPRISE!  

My wonderful friend Mandy surprised me with an early birthday present- MY SISTER! 

She must have known I've been missing her bad:) So she flew her in for a short weekend!

North Dakota is just WAY too far!  I was so surprised that I'm pretty sure I screamed a little and then cried when I saw her.  

I got to spend the whole weekend with my family, friends, and the people I love the most. 

Thanks again Mandy and Britt for pulling that off- I know flying standby really stinks!:)

It was a super great birthday surprise! 

So, my sister just recently bought a new camera and has been taking some photography classes just as a hobby.  She was so excited to finally be able to take some pictures of Tripp.  And boy, did Tripp give Nanny a treat for the weekend... he really had a pretty good weekend, overall.  He stood up for her about 3-4 times, which lately is a whole lot! 

I think they came out great... Pictures I will treasure forever!

Update on little man's transfusion:

We are waiting for approval from the hospital to be able to do the transfusion at home.  

Please say some extra prayers that we can make this happen. 

Also, I think we are battling an infection that can no longer be treated with oral antibiotics.  

I think some tough decisions are coming my way soon.  

Please pray that I make the right ones. 

Thank you all for your KIND words and so much encouragement! 

Love,