A Columbia, South Carolina mom is currently living every parent’s nightmare. 

Shannon Alexander’s six-year-old son, Declan, was recently diagnosed with leukodystrophy, a fatal degenerative genetic disease. Sadly, this cruel disease will soon rob him of cognitive and muscle function. He will no longer be able to swallow, see, feel or perhaps even hear – abilities we take for granted every day.

There is no cure for leukodystrophy. There is only pain and symptom management. Shannon and her husband, Brian, are now hoping to make prenatal screening for leukodystrophy more commonplace. They didn’t find out about Declan’s condition early enough to slow its progression, but they want his short time on Earth to increase awareness of this rare disease and prevent other parents from suffering the kind of heartbreaking sorrow and grief that lies in their future. They are also hoping to spare their other child, three-year-old Lily Berlin, from the same fate.

Shannon and Brian have been told by doctors and have read in their research that they must cherish Declan’s healthy time now, while it lasts. When they realized this, they asked Declan where in the whole world he would go to be the happiest. His response was, “Boat hotel and Disney.” 

According to Shannon, “Everyone who knows Declan knows the kid loves a hotel and he loves traveling.” 

To help make his wish come true and make the most of his limited remaining time, the community has pulled together. Funds are being raised to send the family on Declan’s dream vacation – a Disney cruise (“boat hotel”) and a trip to the Disney parks. The funds will also help with their staggering medical expenses, lost income because of time off work, etc.

Declan's journey (on Facebook): https://www.facebook.com/declandreamsbig

Thank you for your generosity!