The Flying Lifeguards and Kaila's Komfort are two support groups for sufferers of rare diseases, both conceived by young girls who themselves are affected by rare diseases.
My granddaughter, California Vasquez, carries a mutation in the NLRP3 gene that codes for cryopyrin, a modulator of inflammation, a mutation she shares with her father and two brothers. Inflammation is the body's reaction to attack, producing the familiar pain, redness and swelling of infection. In that role, inflammation is a good thing. However, in persons such as Cali, the inflammation can be misdirected and result in an "auto-inflammatory disease." California has an un-named variant of Cryopyrin-Associated Periodic Syndrome, or CAPS that is only known to affect two families, producing fever, rash, joint pains and hearing loss among other symptoms. Other autoinflammatory diseases are more common, such as Chronic Recurrent Multifocal Osteomyelitis, or CRMO, which affects Kaila Mellos, the teen who founded Kaila's Komfort. October is CRMO-Awareness Month, so yesterday The Flying Lifeguards were honored to join a walk-a-thon benefiting Kaila's Komfort.
Instead of walking from Point A to Point B, this was a Cake-Walk. Walking, skipping, or pushing a stroller to the upbeat tempo of a great band (that I wish I had gotten the name of), participants circled the parking lot of National University in San Diego, California.
When the song ended, walkers would stand on one of the numbers on the ground and hope that number was drawn and they would win a cake.
As the next song started, the participants were back in motion...
Another young lady with CRMO was there for the walk, along with her family and supporters:
With 280 cakes, this event came close to breaking the Guiness World Record for largest cakewalk. Maybe next year!
Kaila and Cali both recognized a need, and formed their organizations so that other kids, and adults, with rare diseases wouldn't feel so alone. You can learn more about CRMO at crmoawareness.org, and about Kaila's Komfort at Kaila's Komfort or facebook
This was the first event for The Flying Lifeguards, but hopefully not the last!
Visitor's to The Flying Lifeguards booth were able to make free "Per-Sand-Ality" bottles, layering sand in colors to represent their strengths, and topping it with a seashell.
Find out more about The Flying Lifeguards on facebook and Instagram at TheFlyingLifeguards.
In case you were wondering...I didn't win a cake :-(
Be sure to click on the images to view them full screen!
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