Author: Dr. Jennifer Puck, MD. Dr. Puck directs the UCSF (University of California San Francisco) Jeffrey Modell Diagnostic Center for Primary Immunodeficiencies.
Navajo greeting for “Hello” Friends
Dr. Puck and a team from UCSF, along with Phoenix Children’s and Mayo Clinic in Phoenix, recently returned from their annual visit to the Tuba City Regional Health Center.
The highlight of the trip is always the SCID Picnic. There were over 20 families, many with 3 generations represented, who came to the clinic and the evening picnic. The weather was perfectly clear and not too hot. The plentiful hotdogs, burgers, chicken, veggie-burgers, and roasted and fresh vegetables prepared by Dr. Diana Hu, SCID expert and chef, with her spouse Dr. Steve Holve, were the best ever.
Some families drove over 200 to even 250 miles to get to the clinic and had to stay overnight in a local motel. Distances are very long out in that part of the country. Families really appreciate the chance to connect and visit with each other as well as have their SCID-affected members evaluated by the team of doctors from UCSF in San Francisco, Phoenix Children’s and Mayo Clinic in Phoenix and the Tuba City Regional Health Care front line providers with decades of combined experience with SCID. Increasingly, more of the younger children with Artemis-deficient SCID have been treated with gene therapy in the UCSF clinical trial, and some now have complete immune reconstitution, even getting off IgG infusions. Seeing them running around the garden and finding stinkbugs in the dirt is a highlight.
I was not able to get written consent for pictures, but I did get a picture of the cake, a famous tradition at this event. It always comes from the one and only grocery store in Tuba City, Basha’s, where huge sheet cakes, half chocolate/half white, are decorated with vivid colors – we don’t ask whether they’re natural/organic!!. – This year’s cake had blue roses and the Navajo “Hello” greeting, “Ya’a’t’eeh” with the proper letter characters I can’t reproduce. This is really hard for non-Navajos to pronounce correctly!
Many thanks to SCID Angels for helping with travel funds for families to attend this annual event!
(Autologous Gene Therapy for Artemis-Deficient SCID ClinicalTrials.gov ID NCT03538899)
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