We’re a pretty close family here at Urban Adventures. When one of our partners around the world has a big life event — whether that’s something as wonderful as a wedding or birth, or as sad as a loss — we all reach out, to say congratulations or to send our sympathies.
One of the most recent events that has brought us together is the story of a little girl named Skye. But unfortunately, it’s not a tale for celebration.
Skye has Sanfilippo Syndrome. As the Sanfilippo Children’s Foundation explains, the disease “is a rare genetic condition that causes fatal brain damage. It is referred to as a childhood disease because most patients never reach adulthood…. Over time, brain cells fill up with waste that the body is unable to process. As the brain gets progressively damaged, children experience hyperactivity, sleeplessness, loss of speech and cognitive skills, mental retardation, cardiac issues, seizures, loss of mobility, dementia and finally death, usually before adulthood.”
Our connection to Skye runs deep. Her father, Mark Robson, is the former general manager of Urban Adventures. Although he’s since left to pursue other passions, the fact is that without his efforts and integrity, Urban Adventures just wouldn’t exist today. Mark left the travel industry to become a school teacher, helping to shape tomorrow’s generation. Our current general manager, Tony Carne, praises Mark as his mentor, and we’re sure Mark is now a mentor to many.
February 28 is Rare Disease Day, and Urban Adventures is dedicating this day (and the entire month of February) to raising awareness and funds for the Sanfilippo Children’s Foundation. We’re asking our friends around the world to share their views of blue skies, to send a message of hope for Skye and other children like her. Use the hashtags #blueSkyforSkye and #HopeforSkye to spread the word.
[Tweet “Find out how you can help children with Sanfilippo Syndrome. #blueSkyforSkye #hopeforSkye”]
We raised over $2,000 for the Sanfilippo Children’s Foundation thanks to your donations and proceeds from tours in 14 cities on Rare Disease Day.
Mark and his family don’t want our sympathy. They want a cure for their daughter and others affected by the disease. This month, and especially on February 28, share your blue skies and a message of hope by tagging #blueSkyforSkye and #HopeforSkye. You can also like the HOPE for Skye Facebook page.
If you’d like to donate directly to the foundation, please visit sanfilippo.org.au/donations.
[Tweet “I’m donating to the #hopeforSkye campaign to help children suffering from Sanfilippo Syndrome.”]