Young Girl Raises Funds for Cystinosis Research

There is a race right now in the medical research world to find a cure for a rare metabolic disease called cystinosis.

Only 500 young people in America have the disease, and one of them is a little Boise girl who is quickly becoming a local celebrity.

Few parents go through daily challenges of helping a child deal with cystinosis. It takes a very special team effort.

Hadley Alexander saw her fifth birthday come in like most, but Hadley isn’t like most 5-year-old girls.

Hadley’s body does not retain vital nutrients and minerals that our bodies need to function. So, every six hours of every day she is given a myriad of meds thru a tube in her stomach.

“We’ve been doing this for four years,” said her mother, Marcu Alexander.

The meds are tough on her tummy and eyes, but she knows it’s what gives her life. Life that, on this day, included her first ballet class which sister Stella, always at her side, would not let her attend alone.

“I watch out for her,” said Stella Alexander.

“Our day starts at 7 a.m. with meds and followed by eye drops to remove cysteine crystals from her cornea. She goes to preschool like a normal kid. She brings a medicine tote with her and the teachers there administer the medicine.   She is drinks a 1/2 gallon of milk and a 1/2 gallon of water each day,” said Marcu. “Ben and I take turns.  One of us is up at 1 a.m., we do meds all over again, which she sleeps through, and we start over from there.”

This is a normal day for the Alexander’s dealing with a child diagnosed with a disease only a small few will ever contract.

“Even most doctors have never heard of it. It’s such a rare disease. It affects 500 in the United States, 2000 in the world. We have had to readjust our thinking about this. Every time we get a new doctor or specialist we have to get them up to speed,” said Marcu.

Because there is no federal funding for cystinosis research it is privately funded by the families and friends of the young people affected. It is a grass roots effort that is making great strides in the medical laboratory.

“It’s hard to be in a position like this with your child and you don’t have control,” said Marcu. “We can control meds and how often she sees doctors but that’s it.  So when it came to getting involved we decided the one thing we can do is raise awareness and money that goes directly to research for better treatment and hopefully a cure.”

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