Treasure Valley community rallies around little girl with rare disease

9-year-old Hadley suffers from Cystinosis.
Posted at 5:57 PM, Jan 15, 2020
and last updated 2020-01-16 00:30:10-05

GARDEN CITY, Idaho — Imagine having a disease that affects all of your organs.

That’s the difficult situation for one Boise 9-year-old Hadley Alexander who suffers from Cystinosis — a rare, incurable disease resulting in an abnormal accumulation of the amino acid cystine in various organs and tissues of the body community. Sadly, the life expectancy for someone with her disease is 28 years old.

Now, at an event at Garden City’s Split Rail Winery featuring live music, wine, and a food truck, the Treasure Valley community is gathering around Alexander and her family as they work to find a cure with their nonprofit Hearts for Hadley.

"Everybody wants to help Hadley grow up," said her grandmother, Maryjo Baker.

30% of the proceeds of sales made from 5:00 to 8:00 p.m. are going towards finding a cure.

"What does it mean to have all these people here to support you?" asked Marcu Alexander, her mom.

"It's very special and, um, to think that they're all here just for me," replied Hadley Alexander.

Cystinosis is a rare and incurable metabolic disease that affects only about 500 people in the US, and 2,000 people worldwide.

"Cystinosis is where the amino acid doesn't have a way to transport out of the cells. So instead, it accumuates, and it causes crystals to form and it eventually causes all the cells and the organs to be damaged," said Marcu Alexander.

Six years ago, Alexander started Hearts for Hadley, a group that raises money for research on this disease-- research that she says doesn't get any federal support since it's so rare.

"This is really what's driving us -- the cure. Right now, the average life span for someone with Cystinosis is 28, which is far too young if you ask me," said Alexander.

Since the group's first event, the Alexanders say they've managed to herd a big chunk of change for the cause.

"We've raised over half a million dollars," said Alexander. "And that drives me, because I know we're making an impact."

Alexander says staying busy with events like this -- is what helps her stay strong for her daughter.

"Some might say I'm maybe a control freak, and for me getting this news of the diagnosis of Hadley -- it really took away control I thought I had of being a mom to a new baby, and to a growing child, and so for me the one way I could control this disease was to get involved."

To donate to Cystinosis research, click here.

Hope could be on the horizon for this disease -- previous studies with mice found that the treatment rescued organs from the disease's symptoms. And the first human trial was approved by the FDA last fall, when a doctor in California gave treatment to a young adult living with Cystinosis.

According to Baker, we should know the trial results and if it's effective or permanent within the next six months to a year, so we'll make sure to keep you updated.