Ichthyosis Awareness Month - Anna and Barbara's story: "Harlequin ichthyosis has changed all my life, my values and outlooks."

I first saw this darling on Instagram - Anna had commented on Blessed By Brenna's photos, and I clicked through to see photos of baby Barbara. Anna told me she'd been reading my blog, which I was excited to know, and I asked her if she'd like to share her story in May. I'm so glad she said yes. Barbara has Harlequin Ichthyosis.  Here Anna writes of how she and Barbara defied doctors' prognosis, instead relishing in the wonderful life they have. You can follow Barbara's story on Instagram. 

Meet Anna and Barbara. 

"My name is Anna, I live in a small town in Belarus and has a charming daughter Barbara affected with Harlequin Ichthyosis. Barbara is out first and only child, wished and long-awaited. The day of her birth I remember as if it was yesterday. The first thing the Doctor told me after her birth was "Your daughter will die soon". It was a hard time, but thanks God Barbara is alive, happy and feels good. Now after a not easy way the duration of a year and almost five months I know that everything is going to be all right, and nobody and nothing can talk me round.

My husband and I try to give our daughter all the best - I mean the best doctors, the best care, the best upbrining and education. Our day begins with a long bath during that I scrub her extra skin. After bath I oil her a cream.We use creams Avene with termal water. I oil Barbara three-fout times a day. After all the care procedures Barbara has a physical training. This training includes exercises for making her creep and go sooner, and many-many others. Then Barbara plays a lot, but almost all her games are developing and educational. We engage in the methods of some famous doctors and educators of the time, such as Montessori, Shichida, Doman and others. 

Barbara is a very positive child. She is smiling, communicative, easygoing and charming. Other children like her, they often kiss her and give her their toys. Barbara also has the best friend - a kitten DeDe (she always calls him "dede", so we decided it woud be his name). They are always together, even in the bathroom. 

Harlequin ichthyosis has changed all my life, my values and outlooks. Sometimes I feel uncomfortable when people stare at my daughter or even ask me questions, but I let it be. All in all I know that appereance is not such an important thing. I am happy to have my girl in my life, she made my life full of love, and smiles. And now my life is more interesting and useful, and I am not what I used to be before. Life goes on and I love it."

May is Ichthyosis Awareness Month - I am sharing stories of people who have experienced Ichthyosis. Read all stories in the Ichthyosis Awareness Month Blog Project here.