The tapestry of the life of a medically complex family

Today’s social media allow us the ability to connect with people with similar likes/dislikes, lifestyles or, in the case of my family, parents who have children with similar medical challenges as mine. This network I have written about previously in my post about Community but it has never been more essential or active as it has become after the earthquake and tsunami hit Japan recently. Displaced families across Japan are struggling to find shelter, electricity, food and medical care for their everyday needs. Families with children with complex medical needs are more frantic in their need for these basic essentials.

After the quake & tsunami struck, families reached out to each other through social networks and online media. Once family member status had been determined, families of children with complex  medical needs reached out to their online community of support to help them in their advocacy for the health and safety of their child. When even the basic needs of food, water and electricity are hard to secure, their only choice would be to relocate their family to another region of the world- no small task with a child who often requires direct medical intervention throughout the day and mechanical medical intervention overnight.

Two of these families have reached out to our community and we, family members logging into Facebook at home, on the road, or from the hospital, took up the charge to advocate for these families from our position of safe homes the world over. We answered the call by writing to or contacting local hospitals, media outlets, senators, top government officials and government agencies in charge of allocating resources in areas of crisis the world over. We families, armed with coffee mugs and keyboards, have made a difference in the lives of one Canadian family from Japan who has since relocated to their former home in Toronto. We continue our efforts for another US family still stranded in Japan, concerned for the future of their 14 month old child. Families of children with special medical needs are uniting together to save the world in our pajamas!

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Comments on: "Saving the world in your pajamas" (1)

  1. & our other complex medical needs affected family has a meeting with the Visa office! Woo-Hoo!

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