I remember when I first starting advocating for those with EB.  I was a bit overwhelmed and to be honest, nervous.  I had no idea what to expect when I started to reach out to these families.  Despite my trepidation, I started to make some connections.  One of the first and one of the most profound was when I “met” Sara Denslaw.

Photo Courtesy of Sara Denslaw

Photo Courtesy of Sara Denslaw

In all of my searches to find a story with a happy ending, I stumbled across “In Garrett’s Memory“…not exactly the happy ending that I was searching for.  I remember the sadness I felt when I saw his picture.  I could not imagine

Despite this, the site provided me with a wealth of information.  Information I had not seen on the other sites, this was information written by a mom who knows EB, not only are her children affected, but so is she.  I immersed myself and literally got lost in her blog, gaining knowledge along the way.  In addition to all of the information,  Sara’s blog also led me to the stories of so many others, including her “Family Blog”  Four Busy Bees and Two Little Butterflies.  It was in this blog that I saw hope, I saw a family affected by EB and not being defined by it.  This was truly a unique situation considering that Sara must contend with her own pain while she also tries comfort and ease the pain of her children.  I was totally captivated by this story and this mom.  I really needed to connect with her, so I did and it changed the way that I thought about Epidermolysis Bullosa and she definitely clarified many misconceptions.

Photo Courtesy of Laurie Sterner

Photo Courtesy of Laurie Sterner

Sara, is a very busy mother of five.  She along with her daughter Sami and son, Joey all suffer from Epidermolysis Bullosa Simplex Dowling Meara.  It is EB that also took the life of Garrett when he was less than two weeks old.  Approximately 43 babies each year are born with EB Simplex in the US and of those about 10 of those babies are born with Dowling Meara, the most severe form of simplex.  Often times I think that Simplex is downplayed because it is a milder form.  Joey TrunkHowever, it still presents many challenges and those challenges are not without pain, not without anxiety.

Despite the challenges that Sara faces everyday dealing with EB and just being a mom, she is dedicated to helping families navigate through their situations.  When there is a new family, she is one of the very first to reach out and offer help and guidance   The knowledge and support that she provides is definitely invaluable.  I know that in my own experience she has be a guide and blessing.  I know that when I need a better understanding or if I am struggling, I can reach out to Sara…she is always there.  It is such an honor to know someone who is so giving of their time and energy in the midst of their own struggles.

We spend a lot of time posting about the new babies and I really wanted to focus on this woman who has risen above EB and is using her own experiences for the good of an entire community.  Her situation is so unique and I really wanted to get her perspective. I recently asked Sara if she would share some thoughts with me…

I think a lot of people assume that since I have EB myself, I would know how to care for a baby with EB.  That assumption couldn’t have bee further from the truth when my oldest was born over 10 yrs ago!  Sure I knew what EB was and a good deal about it; but I had no idea how to care for a healthy baby let alone one with EB!  I brought non-stick pads and rolled gauze to the hospital with me.  I had no idea EB as an newborn would be so severe that she would need to spend 13 days in the NICU.  By the time she was four months old, she was missing over 75% of her skin.  She required bandage changes that took two hours everyday.  This resulted in $5000 a month in special wound care supplies! 

Then when Garrett was born I had no idea simplex could have such severe complications that those complications combined with unknowing doctors would cost him his life.  I know many people didn’t believe he had simplex.  The phrase I heard the most after he died was ‘ those with simplex can’t die’.  Well they do and he wasn’t the first and certainly hasn’t been the last either. 

PCC 2012 (132)Then came Joey and I know I was judged a lot by that decision, but I don’t think my life is worse off because I was born with EB; nor my children’s lives.  If I hadn’t been born with EB I wouldn’t know such wonderful people and I would know as much as I do to help others.  But even with all I know, I wasn’t prepared for what Joey came out with; no skin on his knees, ankles, wrist and feet.  He was Sami and Garrett rolled in to one.  Since we knew more about EB than the doctors did, he was able to come home with us,only to end up back there because his airway closed off due to blisters/inflammation a week later.  I never expected to be watching doctors try to save another one of my children when they were 10 days old because something as simple as eating caused so much irritation their airway swelled shut.  Our knowledge allowed us to do dressing changes in less time, however they were still time consuming and tedious.  His skin seemed to slide of from getting wet.  His skin was certainly worse than Sami’s.  He had to be wrapped head to toe, his skin was that fragile, it would just slough off.  I am not sure we will ever know why he was so much more severe than Sami, although we have our suspicions.

I think a lot of people think simplex is mild, easy, simple, but anyone who has dealt with the more severe forms of simplex know that simplex is far from simple.  There is nothing simple about a three month old missing 80% of the skin on the body who must endure a two hour dressing change daily and only get Motrin because his doctor thinks that since it’s just simplex he doesn’t need anything stronger.  Or lying in bed at night when he his sick, worrying he will stop breathing in the middle of the night because his airway sounds swollen or even knowing what a swollen airway sounds like for that matter!  But I wouldn’t trade this for anything.  My kids are happy and healthy.  They enjoy life and they do not let EB stop them for doing what they enjoy.  I enjoy getting up each morning to see how my ‘other’ family is doing as well; reading about all the other EB kids and adults I know.  Sure some things I read are sad, really sad but a lot of the news and updates I read are happy, exciting, and milestone reaching.  While I wish there were no more babies with EB; I am grateful for the families who have allowed me to help, listen and advise them in order to make their journey through their new life with EB a little easier to travel.  -Sara Denslaw

I finally got to meet Sara this summer when I attended the PCC in Florida, it was certainly about time!  I also got to meet her family including Sami and Joey.  What amazing kids…both very happy!

Courtesy of Sara Denslaw

Courtesy of Sara Denslaw

Sami is a very active 5th grader despite her EB and challenges with Scoliosis.  She loves to play with her friends, sing in the school choir and girl scouts (she even goes camping with her troop)!

Joey, is a happy, VERY active almost 2 year PCC 2012 (304)old.  He loves to run, jump, climb on EVERYTHING.  To look at his bandages and blisters you know he has EB.  But to look at this activity level, you’d never guess it!  While is EB has gotten better with age, he is still no where near Sami was by age of two.  His bath and dressing takes about 45 minutes daily and he is still wrapped from his chest down to his ankles.

Sara does so much for this community and I really wanted to take an opportunity to thank her.  Not only for the guidance she has provided me, but the way that she is continuously giving back to the EB community.   I wanted those who have not had the chance to get to know her to learn about her and her family.  I really wanted her to be recognized for all that she does for so many.  Sara is constantly supporting other families and providing people with knowledge that we otherwise would not have.  She is a gift and a blessing to so many.   So Sara, I thank you…this community thanks you.