Walking With Giants Foundation
Supporting Individuals and Families Affected By Microcephalic Primordial Dwarfism

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kenadieIt was only about 12 hours from the time we found out there was a problem with my pregnancy and the time Kenadie was born. A small kitten meow was all I heard before she was whisked away to be cared for. Kenadie was born just about 37 weeks. She was 2lbs 8oz and 11 inches long. She absorbed her surroundings with big black pupils. Her head was so tiny that we couldn't see the rest of her eyes, she was almost a year old before we knew her eyes were blue.

We spent the first month mourning. The only indication of her future was that she wasn't going to live. This information came from doctors and nurses with years of experience and we could only trust in what they said. We lived for each day and we were thankful for the moments. Then it occurred to us that this little girl was full of strength and spirit and we decided to love life into her. We brushed negativity off our shoulders and chose to live. We took Kenadie out into public and ignored stares and ignorant comments. We were proud of our child and wanted to be as normal as possible.

Kenadie was 8 months old before we were given some indication of why she was so small and a year and a half before she was formally diagnosed an "Unknown type of Primordial Dwarfism" at a conference in the United States. At the time we were fortunate to meet a few other families with older kids who had Primordial Dwarfism. Seeing those children; older, healthy, happy and vibrant. Seeing those parents; comfortable, calm and at peace with their destiny. That was just the boost and assurance we needed to encourage us to help Kenadie succeed in life.

Since then we have endured many stays at the hospital, many difficulties integrating Kenadie into normal activities, many tears and many sleepless, worrisome nights. But we have also been fortunate enough to be part of a growing network of people who face the same unknowns as us.

I am proud to be the mother of beautiful girl who is a gift to everyone she meets. I am proud to be the mother of the brother who didn't choose the weight that was born on his shoulders. I am proud be part of a group who chooses to acknowledge the difficulty that the entire family endures when faced with the complexity that a rare disorder can bring.

Walking With Giants Foundation is an excellent organization cared for by a group of selfless and generous individuals. Through WWGF we have been able to connect with other families and create a supportive network of people to lean on in our darkest hours. Even for us, who live in Canada, sometimes a late-night Facebook chat with someone we have spent time bonding with during our week long conference in Liverpool can give the kind of support and strength that can be found nowhere else.

I would personally like to thank the supporters, contributors and volunteers that keep the WWGF going. The annual summer conference and the lifelong friendships that have been formed are a lifeline for me as mother and for each of my children.

Brianne - Kenadie's Mum (Canada)
January 2011

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