Condition: Nephropathic Cystinosis
City, State: Central Point, OR
Club: Hedrick Middle School Sparrow Club Service Hours:
Date Adopted: 12/10/2019
• Everly is a 2-year-old little girl who is very sweet and smiley. Everly loves music and dancing! She is known for her cuddles, kisses and singing Twinkle Twinkle all the time to her brothers and sisters.
• In July 2017, Everly was medically air lifted to Doernbecher Children’s Hospital in Portland, Oregon. She spent three weeks in the ICU and it was discovered that she was in kidney failure. Doctors hooked her to four IVs and 24-hour monitoring, which saved her life.
• During that stay at Doernbecher, it was discovered that Everly has a very rare disease called Nephropathic Cystinosis. Cystinosis is an incurable genetic disease and is the most common cause of Fanconi Syndrome. This means she will need electrolyte replacements and medications to keep her organs working for the rest of her life.
• Cystinosis comes with complications that will include: Kidney failure leading to transplant, light sensitivity and blindness, cystine crystals that damage all organs, extreme dehydration, daily vomiting, delayed puberty, slow growth, and a shortened life expectancy.
• Everly receives many medical treatments and therapies every day that include being hooked to a feeding tube constantly, hourly eye-drops to prevent blindness, many syringes of medications, as well as feeding and physical therapy.
• In spite of all her medical challenges, Everly remains brave and keeps smiling through every set-back. She has faced her medical challenges like a true warrior and truly has an infectious smile.
• Everly will be adopted as a Sparrow to Hedrick Middle School. Hedrick students will have the opportunity to work hard to raise money for Everly’s ongoing treatment through sponsored community service.