Skip to content

Archive for January, 2014

“Our Caterpillar Would One Day Be a Butterfly”

We often hear stories from young families who are given the diagnosis of ichthyosis, soon after the birth of their child. Many families are surprised, confused, and often scared. This week we received a story from the Taylor family, sharing not only how they coped with the initial news that their baby Brooklyn, now three months old, was born with lamellar ichthyosis, but how they are finding their strength in Brooklyn herself.
_____________________________________________________________
Brooklyn Taylor was born as a collodion baby in October of 2013 at Fauquier Hospital in IMG_20131107_195144Warrenton, Virginia. We had no knowledge of this beforehand and our oldest child had no signs of ichthyosis, so seeing Brooklyn like that was very scary for us. She was full-term and appeared very healthy, but when they took her from my arms I thought the worst and prepared myself to hear that she wasn’t going to make it. Hours after she was born they transferred her to a more equipped hospital.

She spent nine long days in the NICU ward at University of Virginia in Charlottesville. Doctors came and went and we were told the worst, but we knew that our little caterpillar one day would become a beautiful butterfly. Her skin appeared as if she had been burned and it was so tight that it pulled her mouth and eyes open until they were flipping outwards. We were afraid that she wouldn’t be able to eat on her own due to the complications of her closing her mouth, but Brooklyn didn’t give up. With help from a wonderful lactation specialist she latched on, but later we realized it was less stressful to just bottle feed.

A doctor suggested that we go ahead and do a skin graphic surgery on her eyes to help them close. We begged him to wait until the hard shell came off so we could see if maybe it would fix itself. Weeks after coming home, the membrane fell off and within days Brooklyn was closing her eyes on her own. We went to a follow-up appointment with the doctor and when he saw her he could not believe his eyes.

IMG_20131204_120251 Later that month we were told by her dermatologist that she had lamellar ichthyosis. We were overjoyed to finally have a name to put with the condition, but reading about lamellar was probably the hardest thing for us to do. Of course the pictures and information were very helpful, but they didn’t give us any hope. Later we saw that the hope we were looking for was right there in Brooklyn. From day one, she has showed us to never give up and that she doesn’t need to be healed, but accepted for who she is and how she is – beautiful inside and out.

Three months have passed and we are still learning about her condition and finding out what works for us. Bath time may be long and straining, but Brooklyn seems to enjoy it and she sure does remind us when its time for it. She is a very happy and demanding baby and every day is a challenge, but she loves having all the attention. Other than that, she is a normal child to us and should be treated as one by others. We are so proud of our beautiful little girl and because of her everyone can see what real beauty looks like.


Conference, Connections & Life Changing Moments


There is no greater way to express the life changing moments that occur for members at our Family Conference, than to invite you into one of those very moments. Board member and FIRST advocate Tracie Pretak has had gained enormous benefit from attending the conference, but there is one special moment she’d like to share, that stands out a bit more than the rest.

Not sure if you should attend the conference? Consider this:Twenty-six years ago, I had a two-year old daughter with Lamellar Ichthyosis (LI) and we attended our first FIRST conference and our lives would never be the same. Meeting others who understood, who’d gone through what we were going through, and grew up to be successful and happy was overwhelming!

One man I met, Jim, totally changed my thoughts on how to raise Bailey. You see, Jim, who also has LI, told me that he ran cross-country in high school. That blew my mind…because with LI, Jim can quickly overheat.  He said his parents let him try it and found a safe way for him to do it (people would stand along the route and throw buckets of water on him!). He said they tried to give him as normal a life as possible. And so…I did that with Bailey. And when she wanted to dance, on a hot stage under hot lights, I thought of Jim…and I said yes! We took precautions and trained the dance teacher and stage crew on how to prevent and treat heat stroke.

Bailey not only excelled at dancing, she continues to grace the stage at our annual recital. Plus she now is teaching a new generation of little dancers. I’m not sure any of this would have happened, if we hadn’t met Jim.

Fast forward to last year’s conference. We had not been to one in awhile, but decided to go and encourage other families, kids, and teens affected with ichthyosis. On the first day, we walked into the meeting room and who did we see? Jim! Unbelievable! We hadn’t seen him in 24 years! It was so amazing for Bailey to meet the man that “let her dance!” I felt like everything came full circle in that moment.

We were there to offer to others what he gave to us…HOPE. We learned that Jim has actually run a marathon! What an inspiration! It was so amazing to watch Bailey throughout the conference that weekend. I have never seen her so self-assured, so confident. It was worth every penny spent to see her smile; to see her be so open; to see her inspiring the kids and teens and parents and grandparents!   It was such an amazing weekend of connecting that I don’t think we will ever miss another one.

Come to Indiana…we want to meet YOU!!! – Tracie

Different is Beautiful.

It was truly amazing to see the response from our members and followers to the TinySuperheroes T-shirt promotion, created in honor of their one year anniversary, and also in honor of their very first cape recipient, FIRST member Brenna Westlake.

“In just five days 75 t-shirts have been ordered! In my mind, a total of 100 for the month was the original estimate,” said an excited Robyn Rosenberger, founder of TinySuperheroes. “Luckily the t-shirts are print-on-demand, so bring it on!”

If you are a fan of our Facebook page, you’ve already seen the uplifting phrase splashed across the front of the shirt, “Be Super in the Skin You’re In, Different is Beautiful.” It is as simple as it is powerful, and is striking the most resounding chord with our audience.

In fact, it seems this message has satisfied a craving; a desire for the opportunity to project one’s own voFB6ice, speak one’s mind, and be a part of something that is inspiring such a profound change in perception. It got us thinking how important it is for people to feel like they are not helpless; that they themselves possess the deepest potential for transformation.

And although it has only been a few days, we have already witnessed the transformation ourselves. As these individual voices of courage join forces, together, they are becoming as strong as the most powerful of choirs. Different is Beautiful.

Purchase t-shirt here:
TinySuperheroes