Ichthyosis Awareness Month: meeting Evan.

I was lucky enough to stay with DeDe, her husband Joe and Evan on my trip to America. They live in Connecticut - surrounded by woods - and sometimes the bears come out to play on bin night. I was sad I didn't see a bear! I did see snow for the first time though. It was such a good stay - I was made to feel right at home - enjoying great company, beautiful food, a Microsilk spa and a guest room gift of Aquaphor!

You may remember Evan's story from last year. DeDe and I have become good friends since meeting in NYC in 2012. I was so excited to meet Joe and Evan especially. She's incredibly proud of him on social media and I can see why. He is such a young warrior - as DeDe's blog name suggests.

Evan is almost four years old and as DeDe writes below, he has blossomed since last year. She credits this to his schooling. It's so great he has aides to help his education and apply his creams. His school *gets * Harlequin Ichthyosis - DeDe tells me that even the kids in higher grades are such fans of Evan, wanting to sit with him and have him make them laugh. I loved hearing this!

He warmed to me immediately and was excited about the kangaroo bag I gave him. While he isn't yet fully talking, he knows what he wants to say and does his best to express words. At one point I corrected my way of speaking to Evan, remembering he is far more grown up than he looks.

He's very good at playing games on his iPad - counting and doing the alphabet, and gets very excited by watching Caillou who looks a lot like him. Mickey Mouse is his favourite - Evan shrieks when he's on TV, and he has a selection of Mickeys to play with. One day in the car, Evan gripped his Mickey tightly and played us a tune on his harmonica.

Evan is such a delight - he's so happy. In the four days I was there I only saw him cry twice. Despite the expected pain and discomfort of his skin, he's always sunshine. He shows his love by telling people he loves them, and grabs onto his parents and their dog Bruli saying "I got you". He's surrounded by so much love - DeDe and Joe and his other relatives adore him - encouraging him and literally cheering him on when he spells out words or walks with assistance. DeDe especially is so patient with him - if I ever become a mother, I will be looking to her as a role model. She's having another baby this September and with Evan's full time care, I imagine she will be so busy. Aren't they beautiful together?!

I said goodbye to DeDe, Joe and Evan early one snowy morning, before Evan was due to go to the hospital for an ear clean. I was really sad to be leaving them. Evan blew me kisses and said "I love Carly". My heart melted. I hope to see them again real soon.

While staying with DeDe, Joe and Evan, I was reminded of two things: How similar people with Ichthyosis look - the cranio shape and eye positioning is in the genes, my dermatology geneticist told me. Evan and I look very similar despite our different variations of Ichthyosis. And also that the treatment and care for the condition is ongoing. It's non stop - wake up, bath, creams, applications of creams through the day, watching out for knocks and scrapes, ensuring enough food and liquid is consumed, bath, creams and bed. While there's 28 years between Evan and I, and I have got my shower care routine down to impressive timing, his routine and my routine is very similar. I saw what it would have been like for my parents when I was little - and identified with the optimism surrounding Evan being the same as I experienced from my parents. I also saw the great unknown that DeDe and Joe are facing, and hopefully was able to put some of what Evan's experiencing into words, and offer them a little hope for him.

Say hello to DeDe and Evan again.

"So much has happened since I wrote for Carly for last year’s Ichthyosis Awareness Month. Evan has made great progress and transitioned into school. He has been blossoming into quite the silly little boy and I couldn’t be happier.

In last year’s post I wrote about Evan’s life in general. From the moments of his birth and how I reacted and felt about it, my instant acceptance for him and his condition, to dealing with social interactions. All to which I feel the same about. Evan is my life, my purpose and makes me smile each and everyday. Even more so these days as his silly personality shines through.

His skin care has not changed. Ichthyosis is for life. It’s a forever, non-changing condition. We still apply Aquaphor multiple times a day and have a strict bath routine. And still, Evan puts up with it. Probably because it is all he knows, not to mention it must feel great to be moisturized.

What has changed in the past year is Evan’s development. Though itty-bitty milestones have been achieved rather than huge milestones, for this almost 4 year old, they are achievements never the less. Evan transitioned to a public pre-school when he turned 3 last June. We have been very lucky to be part of an amazing community with an amazing school district. Everyone has been very warm, welcoming and helpful. They put Evan’s needs first to ensure his safety and success in school.

Being prepared prior to going to school was very important. And by prepared I mean having the information about Ichthyosis available for the school staff (which included print outs from FIRST about Harlequin Ichthyosis), a list of Evan’s needs (medical and developmental) and a detailed description of “how to” care for his Ichthyosis from applying Aquaphor to dealing with overheating issues. Making sure everyone was educated about his condition was extremely important for me and for Evan. I even went into the classroom to talk to his classmates about his skin. I let them ask questions so that everyone was comfortable. All of the students have been very welcoming including children in the other grades.

As the school year progressed so did Evan. With the services he requires, he has built up more strength to stand and sit independently. He is actively involved in the classroom with the other students learning his shapes, numbers and letters and has dramatically improved with his speech. Just thinking about his development the last time I wrote for Carly, to now, is a major improvement for this child.

We were fortunate that Carly was able to come visit us while she was in the States. We had a wonderful time and she finally got to see my boy in action. Since Evan is surrounded by so much love and acceptance, it’s no wonder why he’s happy every moment of the day. He is my hero."

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.