Tuesday, October 26, 2010

EB Awareness


This week is EB Awareness week. EB is the abbreviation for Epidermolysis Bullosa, the genetic skin condition that Isaac and Hope were born with.

What is EB?

Epidermolysis Bullosa (EB) is a rare genetic skin disease that causes the skin to be so fragile that the slightest friction can cause severe blistering—inside and outside the body. Today there is no cure. Severe forms of EB cause patients to live with constant pain and scarring. The worst forms of EB lead to eventual disfigurement, disability and often early death.There are many patients who are diagnosed with milder forms, which, while they can be extremely difficult to live with, are non-disfiguring and non-lethal.

The only treatment for EB is daily wound care and bandaging. The daily routine is a grueling, multi-faceted daily regimen. Caregivers, often parents or family members of EB children, must work in tandem with medical professionals to determine and administer different treatment methods to care for EB wounds.

With skin as fragile as a butterfly wing, EB patients are dubbed “Butterfly Children”. On the outside physical wounds prevent them from normal daily activities enjoyed by other children. On the inside, their dreams are the same as any child who loves, plays, learns and grows despite the pain and impediment caused by their disease. With the programs and services of Debra of America, EB’s Butterfly Children and their families find the support they so desperately need. Debra of America works to ensure that a life of struggle is also a life of hope for the 1 out of every 50,000 live births in the United States affected by EB.

This little blurb is from the Debra website. Debra is an AMAZING organization that is devoted to helping EB families and finding a cure for the disorder.

I would love it if you would take a moment and learn a bit about EB. There is such a lack of knowledge out there about it and awareness is the first step. If you then feel led to donate, PLEASE donate to Debra and help them find a cure.

I feel like I don't really have the experience to speak to what it is like to have a child with this condition since Hope's is so mild right now and I never really had the opportunity to care for Isaac, and I have fallen IN LOVE with several families through the blogosphere who are dealing with EB daily. I began searching for a community of people when Hope was diagnosed and honestly though I HATE EB, I can't imagine a more amazing group of people. The support is fantastic and these families live with a grace and love that most of us can't even fathom.

Some of the families I would love for you to get to know are:

Bella's family - Bella was just a few days older than Hope. I followed their blog intently because our girls were so close in age. I fell in love with each of them as they loved Bella the way no other family could have and as Bella endured a Bone Marrow Transplant in hopes of a cure. Bella went Home to Jesus this month and my heart just aches for her family.

Jonah's Family - Jonah was the first baby with EB that I read about. When I brought Hope home before she was diagnosed, many of you referred me to the Williams' blog. Jonah's mommy Patrice writes his blog and her writing is captivating. She is real, honest and has the best sense of humor. Jonah's blog gave me hope that even if things with Hope got worse, we would still find joy and learn how to best care for her. Jonah's mommy and daddy love him with a passion that is so evident from their blog.

Ella's Family - Ella's mommy reached out to me after Hope's diagnosis with words of encouragement and hope. When a child is diagnosed with EB there is a LOT of doom and gloom surrounding those first weeks and Ella's mom helped me see that Hope could live a great life in spite of her diagnosis. I will forever be grateful for her friendship and advice. Ella is an AMAZINGLY sweet little girl who just amazes me.

Leah's Family - Leah was a few months older than Hope. She was a gorgeous little girl who fought with such tenacity. Her story is one of courage and faith. Her family writes an inspiring blog. She went Home to the Lord last December and is now healed and pain free.

Tripp's Family - Tripp has the CUTEST cheeks I have ever seen. When I see his pictures I just want to KISS those cheeks! :) His mommy writes his blog and her writing is raw, honest, courageous and eloquent. She writes of what life is REALLY like as she loves and cares for Tripp. He is one of the most courageous kids I know and I am CERTAIN you will be blessed by his blog. His mommy created the picture above for EB Awareness.

Garrett's Family - Garrett's mom, Sara, is a WONDERFUL wealth of information and she has been so willing to share all o f her expertise with me along this journey. She is also living with EB herself and has multiple children with EB.

And I cannot complete this post without giving props to Ms. Geri Kelly-Mancuso, RN. Seriously. Having a newborn baby is overwhelming but getting that diagnosis of EB is enough to send a person over the edge. Geri has been an AMAZING support and resource for our family...she has talked me down from the ledge several times and reminded me to just enjoy Hope and take things one day at a time. I will FOREVER be grateful to her for her expertise! :) EB is overwhelming enough but when the majority of health care providers have no idea how to help your child without doing further harm it is downright frightening. Geri has been able to help us educate our own pediatrician and our family and I just can't say enough amazing things about this lady! :)


SO in honor of EB Awareness week, please take some time this week and educate yourself about EB, take some time to "meet" the families I listed above. I know you will be blessed by each one of them. I also encourage you to pray for these families and for anyone out there living with EB. And of course if you can, PLEASE donate to help find a cure!

3 comments:

Linda said...

Hi Kristy: I am new to your blog. I know all about EB but I wanted to thank you for posting for EB awareness week.
I am praying for the cure for this awful disease. It has been a rough couple weeks for the EB community, with Beautiful Bella's passing.
I love these children too after reading all the blogs. They are all so special and with a very special spirit. They are blessed with an inner strength.
Thanks again and I will continue to check out your blog to see how your children are doing. Love and Peace Leah's Nana

Meghann Gehring Turnquist said...

What a great post for EB awareness!! Thank you for including my Leah in it; and for your sweet words. : )

Geri Kelly said...

You are so kind to single me out for praise. Thanks you so much for your support of DebRA!