EURORDIS' First Video Contest managed to attract 49 entries to the Rare Disease Day website (www.rarediseaseday.org). People from all over the world, representing a variety of rare diseases, ‘told their story’ with a little help from a video camera.
Michelle Hays is the mother of Katy, 3 years old, suffering from a rare disease called PKU (short for Phenylketonuria). Although Michelle makes jokes about how hard it is to remember that long funny-sounding word, there is nothing funny about PKU and remembering its name is definitively not the hardest part of dealing with this rare disease.
Katy was born in Mexico, where PKU screening was not standardized at birth. She was diagnosed at 13 months. A serious delay in all the areas of development and the onset of a severe epileptic condition (West Syndrome) sparked the search for a diagnosis. Already at that time, her mother was using the Internet to connect with others and find a diagnosis.(See: www.katyhays.blogspot.com)
The Hays now live in Texas, where Katy is getting the best help available to her. She is still not aware that she has PKU. She lives a pretty normal life and Michelle, her mom, tries to make mealtimes fun by involving her in all the cooking and preparing. Michelle is part of several PKU communities, but that is only via emails, recipe swaps and forums. Michelle has never met a PKU person in person and there is no one with PKU in her region.
Michelle is an avid blogger and vlogger (www.michellehays.blogspot.com and www.youtube.com/michellehays). About a week before the contest, she had uploaded the "PKU and Us" Video to her blog, in order to make her readers understand her a little more. She found out about the rare disease video contest through a PKU newsletter. It encouraged her to get involved and raise awareness.
In the words of Michelle: “In a world where information is so readily available, I understand that connecting with as many people as possible can bring about a change for my daughter. Your organisation seemed like a perfect platform to speak and connect with people who care and want to make an impact.”
We cannot but love Michelle’s video, not only because it is funny and entertaining but also because it is educational and tells us a great deal about living with the disease. It also shows that one can raise awareness with little means and simple tools. Michelle told us that on a late and sleepless night, she sat in her dining room, set up her camcorder on top of a stack of books and begun to talk to the camera! That is how the “PKU and Us” video was born.
If you want to see all the videos entered in the Rare Disease Day 2009 Video Contest go to: www.youtube.com/rarediseaseday >
Photo and video © Michelle Hays