5-year-old Hadley Alexander isn’t normal.
Every morning, her day officially begins at 7 a.m. She’s coaxed awake by her parents and, through a tube in her stomach called a g-tube, Hadley’s given what’s actually her second round of medication for the day.
Medication that makes her vomit.
After that, Hadley has six hours of freedom—time enough to go to pre-school, enjoy dancing with her big sister, and play with her baby dolls. All of which is regularly interrupted by eye-drops, blood draws, and doctor’s appointments.
Once those six hours are up, Hadley’s day stops just long enough to begin her medication routine all over again.
But none of this is the reason Hadley isn’t normal.
While some people may find this alarming, Hadley’s day is typical for the 2000 people worldwide sharing her rare diagnosis of cystinosis.
Since Hadley’s diagnosis at 18-months-old, days like the above have become very normal for the Alexander family and others living with cystinosis symptoms and diagnosed it. But they still hope that one day, for all 2000 people living with cystinosis, this can change.
That’s why, for two years running, they’ve been responsible for the Hearts for Hadley fundraising event, which raises money to cure cystinosis and benefit others through research.
The event has made Hadley a celebrity in her hometown of Boise, Idaho—a regular Shirley Temple!
And that is what truly makes Hadley your “not-so-normal” little girl. It’s not her medication or her diagnosis: it’s her spirit.
Hadley is tough as nails… She is funny and curious and just a joy to be around,” describes her mother, Marcu.
As for Hadley?
Hadley sees herself as being just like her sister: a “big girl.”
And the biggest thing about her is her heart.
If you have any any desire to save adorable people’s lives, scroll slightly below what you are currently reading and click a social button to share this awesome story!
All images were provided by Hadley’s family and her Hearts for Hadley Facebook page.