Condition: Nephrotic Syndrome
City, State: Bend,OR
Club: High Lakes Elementary School Sparrow Club Service Hours:
Date Adopted: 2/15/2019
Ivorie's Story:Ivorie was a very healthy little girl until she became extremely ill and was diagnosed with Nephrotic Syndrome on April 3, 2018. Nephrotic Syndrome is a condition in which the blood vessels in the kidney do not work properly and protein escapes from the blood into the urine and fluid accumulates into the body tissues. Untreated this is a life-threatening condition.
Ivories’ first hospitalization lasted for 5 days at Doernbecher in Portland. She had a biopsy done where a sample of her kidneys were taken in for testing. The results showed Ivories’ specific type is a mix of components from rare types of the syndrome. The doctors called it, “The Ivorie Syndrome”. Due to the severity of her condition, she was put on a low sodium diet, fluid restriction and was taking approximately 18 medications a day.
After her release from Doernbecher Children’s hospital, Ivories’ condition continued to worsen dramatically. The decision was made to immediately return to Doernbecher by Life Flight for more tests and procedures. During this hospital visit, she had a PICC line inserted to make it easier for Ivorie to comfortably get the infusions needed to help her body. This was a scary time for Ivorie and her family.
Once back home, Ivorie became very weak and the next day her mom took her back to the emergency room. She was again sent by Life Flight back to Doernbecher where more tests were done. Doctors discovered Ivorie had become diabetic because of the steroids she had to take, and she was given insulin to help control that. Ivorie started her new routine of having 3 infusions weekly and multiple physical therapy appointments. After 2 weeks of consistent treatments, she was finally well enough to return home. Ivorie continued with this intensive schedule for well over a month. She had missed a lot of school.
Ivorie fought through a very challenging time in the early months of her diagnosis. Though she no longer deals with diabetes and her medication no longer has to be infused, it is likely that Ivorie will continue to deal with this disease her entire life.
Ivorie is a joyful and smart little girl who loves science and inventing things. She loves reading and going to the library. She also enjoys music very much. Playing with her little sister makes her happy and she is a wonderful big sister.
Sparrow Cash raised for Ivorie will help with ongoing medical expenses and everyday living expenses. Students at High Lakes Elementary will “earn” Sparrow Cash by completing a minimum of 256 hours of sponsored community service.
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