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Monthly Archives: May 2017
Quarter Craze Fundraiser for Epidermolysis Bullosa on May 18th
Join us for Quarter Craze, our annual MOMS Club fundraiser, on Thursday, May 18 at Cattlemen’s Restaurant in Roseville. The event takes place from 6 p.m. to 9 p.m. Tickets are $3 per person in advance; and $5 at the door. Ticket price includes complimentary appetizers and a cash bar. Be sure to bring plenty of quarters for the live auction with some great prizes from local businesses and events, such as SF Giants, NASCAR race, Oakland A’s Tickets, and more!! This year’s proceeds will go to help Kiira and spread awareness about Epidermolysis Bullosa. Kiira Kinkle was born with recessive dystrophic epidermolysis bullosa, a rare genetic condition in which her skin blisters with the slightest touch. Bandaging her limbs are the only way to help prevent, but also treat her wounds. The bandages and medical expenses of such a condition are ongoing and expansive. We hope to see you at on the 18th!
When: May 18th from 6-9pm
Where: Cattlemen’s Rocklin, CA
Buy tickets: https://www.eventbrite.com/e/moms-club-quarter-craze-2017-tickets-31899684816
Learn More: https://www.facebook.com/events/1037449219693350/
Day +275 Post Bone Marrow Transplant
Day +275: The past couple of weeks have flown by. Everyone is over their strep and Kiira’s labs on Monday showed improvement–symptoms of hemolytic anemia are getting better and Epstein Barr Virus is coming down. We are thankful for the positive trend!
We got our dates to return to Minnesota for the 1-year checkup in mid-July. It’s hard to believe it’s nearly been another year. During the visit, we have an opportunity to do a special skin grafting procedure, Cellutome hematopoietic graft, for Kiira’s chronic wounds. They would use a vacuum-like device on Miia (Kiira’s sister and BMT donor), a painless procedure that grabs the top layers of skin and put those cells on Kiira. The trial hypothesizes that those areas would have long-lasting effects of wound healing, because the skin would be producing collagen VII (which Kiira is missing) in that area of skin. Kiira’s knees and hands would be our top priority, but it can only be done on areas with open wounds at the time of the procedure. The lightest friction on her knees–the act of sitting on the floor and stretching her leg out, blisters her entire knee. Other areas of her skin are fine with much more friction, but not her knees. We don’t know if the grafting works since this is the first year of the trial, but we are hopeful that in combination with the BMT, it will further strengthen Kiira’s really fragile areas.
Thank you for your continued prayers!
Remember, if you are in the area, come meet Kiira on May 18th from 6-9 pm at Cattlemen’s in Rocklin, Ca for a fun auction event with loads of prizes. All adults are welcome and remember your quarters to bid on prizes. You also do not have to stay the whole time to get your prizes. If you have any other questions, please message us. Hope to see you there!