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Posts tagged ‘rare disease’

My Life as an Ichthyosis Mom

Over the years FIRST has collected and shared hundreds of “life stories,” as storytelling offers a meaningful way for members to open up and communicate their most significant, emotional, and inspirational moments.  And, equally as important, stories can heal our hearts and open our minds.  Today we’d like to share a mother’s story that began with a life-changing choice in 1986…

My Life as an “Ichthyosis Mom”  by Tracie Pretak

Things definitely did not start out easy. I was a freshman in college with huge plans and dreams for my future…but it was all crushed in a hurry when I made a life-changing choice and I was faced with an unplanned teen pregnancy. I became a single mom on June 15, 1986. I will never forget that day.

I remember going to the doctor on Friday for a check-up. It was still 3 weeks until my due date, and he said he expected me to go full-term. It was weird…but I had this strong sense that the baby was going to come early. On Saturday, our family attended my cousin’s wedding and then a graduation party. My brother Mark kept trying to get me to dance. I finally gave in when the Blues Brothers were playing, but at the end of the song, he dipped me and lost his balance. We fell to the ground and his knee hit my lower back. I was up all night with muscles spasms…and when the labor started, every labor pain was accompanied by more muscle spasms.

On Sunday morn, we headed to the hospital. I had this really strong belief that something was going to be wrong with the baby. I couldn’t explain it…I just knew. I also decided not to breast feed. I didn’t know why…just that I shouldn’t. And I knew that even though something was going to go wrong, somehow, the baby would be okay. I truly believe that this was God preparing me for what was to come.

Bailey Pretak

Bailey Pretak

The delivery went quickly, but I knew the moment I looked at my mom’s face that something was wrong…VERY wrong. Little Bailey Rae was born encased in a collodion membrane. The best way to describe it is to say she looked like a little “sausage”. There was fluid between the membrane and her skin. I didn’t even get to hold her! They brought her over in an incubator so I could reach in and touch her. Then, within 20 minutes of her birth, she was life-flighted to the nearest NICU. My doctor looked in his medical books and came in to tell me he believed she had ichthyosis. A dermatologist at the NICU called me the next day and confirmed it was lamellar ichthyosis.

I wasn’t released from the hospital until Tuesday, so she was 2 days old when I finally got to hold her! She stayed in the NICU for two weeks, until most of the membrane had peeled off.An unplanned teen pregnancy radically changes your life. Being a single parent is incredibly difficult, and having a baby born with ichthyosis is truly overwhelming. As fate would have it, I had all three! I honestly don’t know how I would have done it without the love and support of my family. My parents offered to watch her so I could finish college. Kip and Katrina helped, too.I wish I could say it was also easy, but there were parents who called the school principal and asked to have their kids moved to a different class; people who wouldn’t touch things she had touched; kids who teased her and called her “Scaly Bailey”. Those things just broke my heart.

Bailey Pretak

Bailey Pretak

As the years went on, I became more and more angry at people’s reactions and Bailey became more shy. She would hide behind me because she knew she was different. It wasn’t until I watched Bailey’s reaction the first time she saw a black person that I realized it was just a natural reaction for people to stare at something they’ve never seen before (however, this still doesn’t explain their rudeness). So we decided that every time someone stared, we would smile and wave. It has helped so much. You see…my negative reaction to the stares and rudeness was only making her more insecure. It was a turning point for both of us.

However, God has blessed her with so many amazing people to help her along the way. She was loved and accepted by her pre-school teacher, Mrs. Shauna (Shauna Miller). She met a wonderful friend in that pre-school, Julie Boults, who is still her friend today. She had the best Elementary School Principal in Mr. Bob Grumley and she was loved, accepted and challenged by her dance teacher, April Cush. Her confidence grew as she gained more and more experience performing on stage, thanks to both April and Beth Lenaway. She got a “daddy” who loved her like his own and adopted her and had a “sister by heart” in Cailtyn Pretak, who practically lived here at times. She had a pen pal, Laura Ashton, who was the first person she ever met with ichthyosis and who truly understood what she was going through. She was blessed with the best friend ever when she met her college roommate Natalie Cisternas Hann. And our church has been amazing! She credits them with being the first group of people to make her feel accepted. Her Sunday School teacher, Toot Mecca, changed her life for eternity.And there are two moments of her journey I will never forget. One, when she was crowned homecoming queen, (voted on by her classmates!), a moment we never dreamed was possible for a girl with ichthyosis. The other was during her senior year of college, when she sat in the spotlight and played piano on stage in front of an audience full of people. I couldn’t stop crying as I realized how far she had come!Bailey has grown from a shy, insecure little girl into a strong, beautiful woman who now teaches little “princesses” the meaning of true beauty.

Yes…it has been extremely difficult at times, but I can honestly say that what began as my greatest challenge in life has turned out to be my biggest blessing ever. God has given me the sweetest, most compassionate and most inspirational person I have ever known as my very own daughter. Wow! Today I am feeling SO blessed to be an “Ichthyosis Mom.” :)

Please share your story with us!

 


Raising Awareness for Rare Disease… One Cape at a Time

 

If you search the Internet for the origin of the “superhero cape,” as I just did, you might find yourself lost in a cyber-sea of Superman quotes, Twilight-tween tweets, and an oddly expansive selection of Zorro fan pages and Batman vs. Green Lantern public debates. I suppose now I am well equipped with unique and witty cocktail party conversation – particularly on Halloween – but more importantly, I am also certain that the superhero cape, regardless of its origin – has grown into a universally iconic symbol, summed up in single word: adventure.

For Robyn Rosenberger, founder of “Tiny Superheroes”, life, lately, has been nothing less. I had the great pleasure of speaking with this unlikely seamstress, who is quickly becoming an icon in her own right.

“I am not a seamstress by any stretch,” Robyn said when describing her epiphanic moment. “During the summer of 2012, I made three capes. One for my son, my nephew and my dog – just out of the blue, just for fun, and they loved it.”  That same summer she had also been following the blog, Blessed by Brenna – a weekly chronicle, authored by a young mother who happened to be an old schoolmate of Robyn’s husband – and who had also just given birth to a baby affected with Harlequin ichthyosis.

Then, one day while perusing the Blessed by Brenna blog, it happened — the “Aha” moment that would change Robyn’s life….

“Brenna needs a superhero cape because she is truly extraordinary!” Robyn thought as she rolled up her sleeves and began to assemble the fourth little cape she had ever sewn in her life.

However, when the story of Brenna’s cape broke in the blogosphere on both Robyn and Brenna’s blogs, it was as if the whole world was watching.  Unbeknownst to Robyn, when she had sewn that last little stitch on Brenna’s little cape, she had also begun the thread of something truly extraordinary herself – an organization that would empower children affected by rare disease all over the world.

“We decided to set up a page on our blog where we could take nominations for the next Tiny Superhero to receive a cape.” Her blog, Tiny Superheroes, now receives nearly 20 nominees a day, from a vast range of rare genetic disease communities, the world over.

“We seem to have a lot of interest from the ichthyosis community. It has been so wonderful getting to know these kids. And what’s been really amazing is that the children are all so different, so special in their own way.”

Tiny Superheroes has  been featured on Today.com, Fox News, Evening Magazine and the Huffington Post. But the most surprising fact?  The entire organization officially opened its doors just four months ago, in January of 2013.  “Now we’re even getting messages from people all over the world who’d like to volunteer and help us sew capes.  I’m trying to figure it all out as it comes – it’s really incredible how quickly it’s grown – but it seems to be all working so far.”

The second most surprising fact? In those mere four months, Robyn, and a small army of volunteers, have sewn nearly 500 capes – (although Robyn alone sewed 300 of them!)

Admittedly, this was not a lifelong dream of Robyn’s, as she had no experience, nor grandiose vision of one day helping to raise awareness for rare diseases. “It’s like the kids chose me, and it’s taken on a life of its own. I feel so privileged and I couldn’t be happier about where everything is going.”

By all accounts, the kids chose well.

However, Robyn now knows that she may not have been chosen to simply sew hundreds and hundreds of tiny capes.  “What I realized is that this work can help kids raise awareness for their own disease – which is really powerful. It’s much more than giving them a cape. It’s letting these kids know they can change the world. And I believe they can.”

And there you have it – no searching, nor super power, necessary.  Sometimes a hero really does just…come along.

For more on volunteering, donating, or nominating a Tiny Superhero go to www.Tinysuperheroes.com.

Learn more about how Robyn is empowering Tiny Superheroes on the video below.

Tiny Superheroes Video Screenshot-2013