Becoming a Mommy of Two: a guest post by Stephanie Turner

One of the questions I get the most is: “how is that young woman with Brenna’s condition who had the baby??” In 2013, Stephanie became the first person with Harlequin Ichthyosis to give birth… and not only did everything with her pregnancy and delivery go well with her son, but Stephanie and her husband Curt welcomed a daughter last year! We got to meet Stephanie and her family nearly two summers ago, and we are looking forward to the day when we get to see them again and meet her daughter. Today, Stephanie is sharing about life with two babies 18 months apart while also caring for her own rare disorder… Last November 5th, I became a mommy of TWO ....more

Step2 Giveaway for Ichthyosis Awareness Month 2015! YOU PICK!

We’re coming upon the close of Ichthyosis Awareness Month this May! If you’re new here, you may be asking “what is this word I have never heard of and can’t pronounce?” Ichthyosis (ick-thee-oh-sis) is a rare skin disorder, and our daughter Brenna was born with a severe type called Harlequin. It is a life-long condition that affects her every single day, and we’re raising money for the Foundation for Ichthyosis and Related Skin Types...more

Not Taking Anything For Granted: a guest post by DeDe Fasciano

If you’ve been following for a while, you’ll remember DeDe and her family. DeDe, her son Evan and her mom came to visit us when Brenna was just 11 months old – and it was so exciting meeting someone in person who also had Brenna’s rare condition! We also got to hang out again last summer at the FIRST family conference, along with several other kids...more

Day in Our Life: Bath Time

In honor of Ichthyosis Awareness Month, I’m going to run a couple of posts showing one of our days through photos (and linking to some videos on Instagram) to give you a visual of our life with Harlequin Ichthyosis… Following up on my Morning post, I was planning to do an “Afternoon” Day in Our Life until I began editing the bath time pictures, and I decided that this is such a huge part of our day, every single day, it deserves its own post....more

A Day in Our Life: morning

I can easily write about our days – our routines, our challenges and more – but sometimes it’s even better to show. I can describe about what bath time is like, or how much Aquaphor we use and how it builds up in our laundry, but until you see a photo or video, it probably doesn’t really sink in. So in honor of Ichthyosis Awareness Month, I’m going to run a couple of posts showing one of our days through photos (and linking to some videos on Instagram) to give you a visual of our life with Harlequin Ichthyosis… It’s a Tuesday, which I always love ....more

Hearing the Music: a guest post by Tina and Rog Thomas

We were inundated with people in the ichthyosis community reaching out to us after I started blogging when Brenna was born, and it was hard to keep everyone straight sometimes – who belonged to what family and what kind of ichthyosis they had. But there was one couple who really stood out – Rog and Tina Thomas. They had adopted a little girl in Hong Kong who was born at a time when surviving Harlequin Ichthyosis was nearly unheard of ....more

“Do I Look Pretty?”

You smile with glee as you slowly spin and pat...more

Raising awareness as the only family in Ireland affected by Harlequin Ichthyosis: a guest post by Carleen Gallagher

I don’t even remember the first time I connected with Carleen Gallagher and her family, but it was like getting and giving a hug from the very first email. Carleen and her husband Gary welcomed their daughter Lucy just months after Brenna was born, and Lucy spent months and months in the hospital after being diagnosed with Harlequin Ichthyosis. Lucy and Brenna look so much alike, and have had such similar experiences that have really bonded us with the Gallaghers – from infections and eye surgeries to dealing with feeding tubes ....more

Friday Favorites: May 8

This cute kid is getting MARRIED tomorrow!...more