In Memory of Haley: A Service Dog for Patient with Hypokalemic Periodic Paralysis
March 18, 2014
Just like laughter, hope is also contagious.
For me personally, all it takes is a little hope to get to the next day, to knock on the next door, or to conquer the next disappointment. Haley, a service dog for hypokalemic periodic paralysis provides me that hope, even in memory.
In February 2012, Haley was diagnosed with Inflammatory Brain Disease. Suddenly, it was as if I was looking in the mirror. As Haley struggled, I struggled with the progression of my rare disease. About six months after Haley’s diagnosis, Haley got me the phone enabling initiation of EMS during one of my worst episodes and a time of most critical need. This time, my potassium levels were documented.
Thanks to Haley’s service, my potassium levels were documented, again and again and again. Haley’s service not only saved my life but prolonged my life when documentation enabled clarification of the true and progressive nature of what I was dealing with. Unknowingly, I had been battling an extremely rare form of Muscular Dystrophy called Hypokalemic Periodic Paralysis for over 25 years.
In memory of Haley and her dedicated service, approximately 250 ribbons across four states have been distributed with a Haley “in memory” sticker. I had a larger demand than supply, but anyone can still partake in World Rare Disease Day by sharing this story of a rare disease and a rare service dog. One way to participate is by making a donation at /give/, in Haley’s honor. Please mention as Honoree for this Donation “Haley, service dog for hypokalemic periodic paralysis.” I hope everyone had a good World Rare Disease Day and wore Haley’s memory proudly.
Also in Haley’s honor was the creation of “Haley’s Protocol.” The creation and submission of Haley’s Protocol ensures Haley will give service to many others via legitimization of service dogs everywhere for rare and not so rare diseases such as diabetes and epilepsy. Haley’s protocol could ultimately be adapted to other similar neuromuscular or medical conditions that can allow for non-invasive physiological confirmation of a patient’s symptoms.
Using Haley’s Protocol to gather a patient’s specific scent during a diagnostic episode can aid in legitimizing a service dog’s ability via employment of its training in scent detection thus acting as an assistive medical device. Using a series of control scents as well as diagnostic scents, service dogs will be required to detect the diagnostic scent with a 95 percent accuracy rate against a control scent thus employing its scent detection skill as a working service dog. Using “Haley’s Protocol” and its diagnostic criteria as verification of a service dog’s ability, there might be hope that insurance may someday pay for a service dog when considering a service dog an assistive medical device.
In Haley’s memory, thank you for your simultaneous support of service dogs for rare diseases.
Participants remembering Haley’s service on World Rare Disease Day include:
Tom Taylor YMCA-Gig Harbor, WA
Muscular Dystrophy Association of Western Washington-Seattle, WA
Harbor Animal Hospital-Gig Harbor WA
Northern Nevada Center for Independence-Sparks, NV
North Sound Center for Independence-Bellingham, WA
South Sound Center for Independence-Tacoma, WA
Prometheus/Cliffside Apartments-Gig Harbor, WA
Lisset Reyes with Skagit Domestic Violence and Sexual Assault Services-Mount Vernon, WA
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