Monday, October 25, 2010

eb awareness week

In honor of EB Awareness Week (Oct 25 - 31st), I wrote the following letter and included the below photos. I'm printing off 100 copies and stuffing the mailbox flags of the 100 houses closest to ours.

Hi Friends and Neighbors.

My name is Jonah.
 I’m 20 months old and live in the white house at the corner of ....

Mommy wanted me to let you know that it’s EB Awareness Week (October 25th-31st). She said I should probably explain what EB is. EB stands for Epidermolysis Bullosa. It’s the skin disorder that I have. EB is a really rare genetic disorder with no cure. We all have proteins that hold our skin together, but I’m missing one (Collagen 17), and that means my skin is really fragile, like a butterfly’s wings. My skin blisters or shears off with any sort of friction or rubbing. I have to stay bandaged from my neck down to protect me. Tags on clothes, seams, regular diapers, a rub of my face with my hand, anything like that can cause my skin to blister or tear. EB also affects my fingernails, hair, and teeth, and in some forms, there can be internal problems, such as blistering and scarring in the esophagus, trachea, or intestines. My biggest risk is getting an infection in one of my wounds, but Mommy and Daddy work hard to keep me safe. I get a bath and my bandages changed every 24 hours.

I was born on February 27, 2009, and Mommy and Daddy had no idea there was going to be a problem. But when I was born, I was in bad shape. I was missing the skin from my elbows down and my knees down, and had other blisters and wounds all over.
My type of EB (Junctional Epidermolysis Bullosa) is recessive, so Mommy and Daddy each have a faulty gene they didn’t know about that they passed on to me. I spent 32 days in the NICU and only about 20% of babies with my type make it to their first birthday. But I’m almost two years old and doing great!

If you’d like to learn more about Epidermolysis Bullosa, please visit http://debra.org (The Dystrophic Epidermolysis Bullosa Research Association) or you can follow my story on my Mommy’s blog, http://patriceandmattwilliams.blogspot.com.

Mommy just wanted you to know me and about my disorder. She and Daddy hope you’ll speak and wave to me when you see me. I’m not contagious, and I’m just about the sweetest thing in the world, according to Mommy anyway. So if you see a little boy with boo boo’s on his face come to your door on Halloween, it’s not part of my costume. It’s just me: beautiful, perfect, just-right Jonah (that was Mommy’s input again).

Thanks for taking the time to read this note. We love our neighborhood and hope to get to meet you soon!

Love,
Jonah

I'm excited about it! Also, if you follow @EBResource on Twitter today and retweet their EB tidbits for the next 24 hours (or really, until 9 am tomorrow... I'm behind), we'll earn $1 for DebRA, for every tweet, up to $2,500. Make sure you include #ebfund in your tweets today because that earns money too! Thanks, Friends.

And please make sure to email me if you plan to attend Friday night's EB Gathering with us and Bella's family. See below post. 

33 comments:

Andrea said...

Hello there. I just found you and your blog for the first time because of your post on the Debra FB page regarding your letter you will be passing out to neighbors. It is absolutely a perfect idea and such a heartfelt letter, I know it will work.

Our best friends' baby was born Oct. 6 with EB. We are waiting to find out what type of EB it is and should here back from Stanford this week.

Jonah is absolutely precious and love how much hope you have already provided in just a few short minutes.

Thank you!
Andrea

Mindy said...

I think that will be great for your neighbors. Jonah is a really great letter writer. :-)

Meghann Gehring Turnquist said...

That's just about the cutest idea ever!

The Oxford Family said...

Great idea!

Him and Her said...

what a great idea! if got that letter in my box I'd be looking out for yall and want to say hello. I'd never heard of EB till I found your's and Coutney's blog(can't remember which I found first) so reaching out to your neighbors will surely inform many about EB.

Lindsay said...

Love this - what a great idea! I'm sure many of your neighbors are curious but don't know how to ask. Perfect!

Amy said...

Great letter! What a neat way to connect with your neighbors.

Janet said...

I love your (Jonah's) letter! I think it's a great idea! Jonah will probably make lots of new friends because of it.

Laura said...

Great idea for awareness and just for making a closer community in your neighborhood! Hope Jonah gets lots of waves now :)

Laura S.

Lis said...

Patrice, I have chills... That was the most awesome, wonderful, heartfelt, informative letter! What a wonderful way to let your neighbors know what's going on. People don't want to ask what happened,,, YOUR GREAT! Give Jonah a kiss from south Alabama! Tell him I love him! Lisa

Laura A said...

What a great way to let everyone know about EB! And who wouldn't just LOVE to get a picture of sweet Jonah in their mailbox?

I hope he (and you!) have a fun Halloween and can't wait to see pics of his costume!

Love,
Laura

Melissa said...

What an amazing way to increase awareness AND to meet your neighbors. Jonah needs a support group like that surrounding him...what an opportunity. I'm constantly encouraged by your boldness and also by the care you give to Jonah. Praying for y'all!

Y Mama said...

So Creative! I LOVE it!! I think it is a great idea for those neighbors that maybe do really care about you and see you but not sure how to broach the topic of Jonahs bandages. Now you have put it out there for them to know and get educated! I'm thinking of those neighbors that see you on walks or out and about and know you are their neighbor, but have never approached you. I can't wait to hear when you meet some new friends.

Tamara said...

That is AWESOME.


Tamara
New York

Sandy said...

What a perfect letter! I'd love to receive something like that. It should be well-received!

Denise said...

What an amazing way to introduce Jonah to the neighborhood. Your letter brought tears to my eyes...it was beautiful. Just like Jonah.

Denise WI

CycloneMomma said...

I think you are the wonderful wife and mom. I know you have hard days but you make me want to be a better mom. You are a class act!

Dana M. said...

That is the best idea! Love the letter - what a wonderful way to inform your neighbors!

Pam the Realtor said...

What a great way to educate the community. What about sending it to your local paper as an editorial or something?

Lisa said...

Your letter is absolutely perfect! What a great way to introduce your amazing little boy and help knock down your neighbor's fears of what may be going on with Jonah. That is an awesome way to invite questions, create friendships, and teach the world about EB.

Abernathy said...

your letter!! so sweet. oh, I love it. I think it is a brilliant idea.

Wanda Wilkinson said...

Beautiful, perfect, just right Jonah. Perfectly describes that sweet little fellow. I can hardly wait to see you on Friday.


Love you

Stef said...

I hope that its okay, I linked your blog address onto my facebook for EB awareness. I am an OT student (I CANT WAIT to work with little ones just like Jonah one day soon) & fellow my classmates are "friends" so they will be sure to see it & gain a bit more knowledge base. I also mentioned that you are AMAZING (even though you may not always feel so sure, you are an inspiration).
Love to Jonah <3

myfallingleaves said...

What a cute idea to get the word out - and Mr. Jonah is picking up on his moms writing skills early :)

chinamoon1420 said...

What a wonderful idea! I think I am going to steal that idea during Hemophilia awareness week. But now, your neighbors will all know and not feel uncomfortable about asking questions and what a great way to inform others of EB. You are such an awesome mom!

Photographic Memories said...

Fantastic, Patrice. I bet you'll meet some new neighbors! Especially if this stinkin' weather ever gets cool enough for you guys to walk around the neighborhood! :)

E.C. said...

"just right Jonah"...love it. Please do a follow-up post and tell us about the neighbors' reactions to your letter. I know they're going to fall in love (just like all of us!).

Cyndi said...

I have posted a few times...have been reading since Jonah was a day or two old. This letter is perfect! What a great idea!!!

Tracey said...

I'd say that "Just Right Jonah" has a "More Than Wonderful Momma"!!

Patrice, you never cease to amaze me. The letter is perfect and oh, how I wish I lived on your street to see that sweet and precious boy in person.

God knew exactly who Jonah should have as a mommy and a daddy...God Bless your family!

Enjoy the trick-or-treating too!

Amy said...

That brought tears to my eyes! I know of someone with kids who have EB and they just got done doing an in-service at the children's school for EB Awareness week. Your letter to the neighbors was just great!

Happy Halloween to your family and I hope Jonah has a great time trick or treating this weekend.

Amy

Melissa said...

This is beautiful! I love your creativity used to introduce Jonah to your neighbors and to educate about EB. I pray that this raises up an even larger army of people who will love on and pray for your sweet boy. I wish I could give him a kiss myself. Still praying in NM!
Melissa

parkerkrist said...

I like the pictures the most ,very cute pictures.

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Andria said...

We include Jonah in our prayers every night!!

I thought this letter was a wonderful idea. If I got a letter like this from a neighbor, I would really appreciate the gesture.....and I would ALWAYS say hi to that cute boy when I saw him. :)