My name is Chantell. I live in a small community in Fort Nelson B.C, not a very big town for sure but the people are friendly and we call it our home. 17 years ago I found the love of my life and we quickly moved in together. Not long after we had a daughter a healthy 8 pounds 3 ounces little girl, and not long after her God had blessed me with a son who was 6 pounds and seemed so small compared to his big sister. I held him and studied him in a way a mother always does with wonder, excitement and love …I gave him his first bath and noticed he had some skin on the top of his head that had looked to be cracked, the doctor had assured me it was normal. A few weeks went by and he was a wonderful baby, didn’t cry much, he was a good little eater, he loved cuddles but would cry a lot during bath time . I used what we all used on our new baby’s in that time. ,Johnson’s baby shampoo and baby oil for after the bath. It seemed like the patch from his head was only getting worse. My husband and I went back to our doctor who just told me he has dry skin at 3 weeks old…I remembered saying how can he have such dry skin ?..I didn’t know as a new mother of a small toddler and new baby if what I was seeing was normal, or if I was maybe using something that was actually hurting him. I remember him getting bigger and was a joy always as a baby, but his skin was much worse. I tried every cream I could buy to help ..but it didn’t.
A few years went by, he had all the same interests in what little boys are interested in( Spiderman, action figures, transformer movies). He has this soft side about him, I remember a commercial came on about elder abuse and I looked over at him he was in tears and replied to me “Who would do that to there grandma? It made me smile .
One morning I was cleaning up his bedroom and noticed how much dust bunnies ..or what I had thought was dust bunnies was in his room. Was in his covers on the floor around his bed. I was realising this wasn’t just dry skin.
When he was about 5 years old, on a very hot summer day, the kids were all playing outside and Andrew came in red as a lobster and was telling me he didn’t feel good. I sat down with him and he was so hot to the touch, I remember panicking a little and running him a bath of cool water and he let me put him in, didn’t even resist. As he was cooling he was vomiting. I was afraid for him. We went to the hospital( 102 ) his fever read..I was in tears, how could I have let this happen ? Why didn’t I see sooner ? It was literally half an hour the time he spent outside playing in the yard with his little buddies …I felt horrible…a lesson learned (don’t play hard in the sun). I looked over his little body and it suddenly occurred to me …sweat? He was so hot playing outside yet not a drop of sweat?
Here again at the doctors and finally the door opened, came in he sat down in front of me and my son, who was still not feeling well. He had one look at my son and said “He has ichthyosis! I didn’t know how to really react! I thought what the heck is that? Seemed like a made up illness? Something to tell his crazy mother so she will stop harassing the medical clinic for answers.
He went on to assist in helping us find out more about my boys skin condition and how we can help him. Or how we can make him more comfortable in his skin. We have had a few run ins at school … kids teasing him ..but since he was just a little boy he had this huge understanding about empathy …yes he’s a little different but its what made him special, it is what made him look deeper into someone past the shell of our bodies, see the best in someone with more understanding than I can ever imagine. He is now a tall teenager and doing well, he has many friends and has accomplished so many things! He amazes me.