19 May 2013

Ichthyosis Awareness Month: Joseph's story ~ "Everything is going to be ok."

Joseph's story is one of hope. His Mum, Laurie, writes of the uncertainty when Joseph was born, and then how as he grew, life turned out ok - he's conquered the odds. Joseph leads a social and active life. And Laurie has a positive message to pass into new parents of children with Ichthyosis. Thanks Laurie.

(Joseph and his little sister Faith.)

"My name is Laurie and I live in Wynnewood, Pennsylvania. I have four children aged 14, 11, 7 and 4. My two youngest are affected by (nonbullous) Congenital Ichthyosiform Erythroderma (CIE), a type of Ichthyosis also now called Autosomal Recessive Congenital Ichthyosis (ARCI).

While all my kids are pretty amazing, I want to share about my seven year old, Joseph because he has more experience with other children in a setting outside the safety of home than my other affected child.

Joseph was born at 32 weeks and was a collodion baby. We were lucky to get a quick diagnosis. We were unlucky to get a diagnosis unaccompanied by facts. We were told it was most likely fatal, he had about three days to live, and we’d better gather family. We were terrified.

A nurse in the NICU approached us and said she had seen this before. She told us our son was going to be okay. She gave us hope. We liked her.

Within three days, a dermatologist with experience with Ichthyosis (she had one patient!) came to see us and told us that he would be okay but that there was no cure. She had little or no information for us.

By the time Joseph was six weeks old we believed the following: he may have a shortened life; he would not play sports; he would not make friends; people would be cruel; he would be severely limited in mobility and development, and he would lose his hair. We were sure it was going to be much harder for him than could ever be fair.

Some of these things are true. He has extra precautions. He has limitations. He has to take more breaks. He gets dehydrated and overheated and frustrated. His skin hurts sometimes and itches most of the time. He despises his cooling vest! He has some mobility issues. Some people are cruel.

He has a 504 care plan and weekly occupational therapy at school and he is doing well. He has friends. He gets invited to birthday parties. He is social and comfortable among his peers. When I pick him up, he high-fives at least six boys on the way out. He wears a cooling vest at gym and recess and plays wall ball, kickball, and basketball. He is on a baseball team.

Ichthyosis is part of who he is. Part of what makes him an incredible boy full of life with an amazing smile and gentle spirit.

If I could tell every new parent facing the same diagnosis, I would tell them that that it’s as true for them as it has been for us; everything is going to be okay."

This post is part of the Ichthyosis Awareness Month project. For all posts in this project, click here.

For Ichthyosis and appearance diversity resources, click here.


1 comment:

  1. Oh how very scary at the start! And more scary that the medical staff had nothing to impart for you at the time!

    It sounds like he sure showed them! What an amazingly full life he leads - love the imagery of his high-five-ing his way out of school!

    You have to take the credit for his view of the world, Laurie. You and your family have clearly created a safe, an encouraging environment where he knows he can do anything. Well done to you!


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