Condition: Ehlers-Danlos Syndrome
City, State: Redmond, OR
Club: Redmond High School Sparrow Club Service Hours:
Date Adopted: 11/28/2016
Kirabella, or KB as she prefers to be called, is about the sweetest little 9-year-old around. She has such a compassionate heart and is quite the social butterfly as well! She tries to keep a positive outlook on life in spite of her physical challenges and latest prognosis.
KB was first adopted as a Sparrow in 2014 after it was determined that she had contracted a bacteria from a soft tick and has been diagnosed with Tick-borne Relapsing Fever. At that time, she was on at-home IV therapy due to body aches, muscle pain, joint pain, headache, nausea, vomiting, anorexia, dry cough, light sensitivity, rash, neck pain, eye pain, and dizziness. Her case was extremely rare and never seen in a child before.
KB fought hard and was hopeful that she would get well eventually. Recently doctors discovered that she has Ehlers-Danlos Syndrome (EDS), a genetic connective tissue disorder that effects nearly every organ in her body. There is no cure at this time. KB now wears leg braces and has a motorized scooter she uses to keep weight off her joints. She is losing sight in her left eye and wears glasses, but may eventually need surgery. She battles heart issues, digestive problems, and goes to physical therapy appointments 5 times a week.
KB gets frustrated because she can’t run and play like other kids can, so she is super excited to get her service dog, Mickey, sometime in October. He will help give her mobility and more independence as she gets older… and will also give her comfort when she’s going through the constant pain she deals with daily.
KB is a fighter and yet still a normal little girl. She loves spending time with her mom, playing with her American Girl dolls, Legos, and anything to do with technology. She enjoys science and math and hopes to do something in the field of medical science one day… to help find a cure for this disease she is battling.
Sparrow Cash raised for Kirabella will help with ongoing medical expenses, travel, and everyday living expenses. Students at Redmond High School will “earn” Sparrow Cash by completing a minimum of 256 hours of sponsored community service.
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