Everly T.

Condition: Cystinosis
City, State: Central Point, OR
Club: Kennedy Elementary School Sparrow Club Service Hours: 532
Date Adopted: 1/30/2019

Everly's Story:

Everly is a one-year-old baby girl who has a rare, lifelong genetic disease called Cystinosis. She was born healthy and seemed to be thriving in every way.

At around 9-months-old, Everly started to have rapid weight loss even though she was still eating. Soon after, she became severely constipated, but also had extreme thirst. ​Her pediatrician examined her and ordered blood tests, X-rays, and several other tests. She was admitted to the pediatric ward in the hospital in Medford, but the results of her tests were puzzling and grim.

Because of the complexity of her test results, she was medically air lifted to Doernbecher Children’s Hospital in Portland, Oregon. She spent nearly a week in the pediatric ICU and it was discovered that Everly had stage 1 kidney failure and her body was not absorbing the electrolytes it needed. Electrolytes are crucial for the heart, brain, digestive tract, and muscles to work properly. Doctors worked hard to correct the balance of essential nutrients through four IVs and 24-hour monitoring, which saved her life.

During her 21 days at the hospital, it was discovered that Everly had a very rare genetic disease called Nephropathic Cystinosis.

Cystinosis is an extremely rare autosomal recessive disorder and is the most common cause of Fanconi Syndrome. Fanconi Syndrome causes a person to have an abnormal amount of carbohydrates and amino acids, but waste the important electrolytes instead. Everly will need electrolyte replacements and medications to manage this 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
- Delayed puberty, growth, & shortened life expectancy

A big challenge for Everly at this point, is that she has stopped eating. She had to have a g-tube surgery and will require therapy to re-learn how to eat on her own. She also must take many daily medications that often times make her feel very sick and lethargic. She vomits daily because of the medicine. Everly also gets hourly eye-drops to prevent blindness.

Despite the fact that Everly is constantly hooked-up to a feeding tube and spends many hours a week receiving various sorts of therapy, she remains a sweet and smiley little girl.

Everly loves music! She loves to wiggle dance and pull herself up to the piano to tap the keys. Her microphone is her favorite toy and she can babble along with all songs. She loves to play with her siblings, cuddle her mom and her kitties, and has a big infectious smile.

Everly will be adopted as a Sparrow to Kennedy Elementary School. Students at Kennedy will work hard to raise money for Everly through sponsored community service and fundraising projects.


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