It Takes a Village

By Sarah Hodgkinson

When a doctor told us in those first few weeks after Ema was born, “Don’t get too attached to her. We’re not too sure how long you’re going to have her,” we didn’t easily see her future. We wish that someone, at that very moment, could have told 2004 us that everything was going to be okay. Actually, way, way better than okay.
Despite the grim prediction, and the worst advice we had ever received from a doctor, we all got very attached to Ema. We learned as much as we could about ichthyosis. We found FIRST which gave us the means to make connections with experts in our community. We met people on-line and at the conferences who we consider part of our family. Jeff Gridley from Australia, for example, gave us advice that kept Ema healthy, happy, safe and thriving. He gave us tips on how to keep her cool so she could try everything such as cross-country running and dance, and has been the filter on medical advice that our family doctor has merely guessed on.

This past September, Ema began her post-secondary studies at the University of Victoria
in British Columbia. That is 4,222 km (2,623 miles) away from our home in Woodstock, Ontario.
We chat almost every day, and, while we are all still very attached, we know that Ema is thriving
and it took a village to raise this child.

Ema wrote her own story when she was younger. Read it here.

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Neither FIRST, its Board of Directors, Medical & Scientific Advisory Board, Board of Medical Editors, nor Foundation staff and officals endorse any treatments listed here.  All issues pertaining to the care of patients with ichthyosis should be discussed with a dermatologist experienced in the treatment of their skin disorder.

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