Ben Logan girl, family share story of living with a rare disease on Capitol Hill
Josie Sexstone, 10, and her mother, Jenni, stand Wednesday next to all of the medication and dosages that Josie takes in a 24-hour period to treat her cystinosis, including Cystagon capsules, Levothyroxine, potassium citrate, Phospha 250, Levocarnitine and Zantac. Some of the medications are taken four times a day and require nighttime doses at 11 p.m. and 5 a.m. (EXAMINER PHOTO | MANDY LOEHR)
Benjamin Logan Elementary student Josie Sexstone spent her spring break last week just enjoying some of the perks of being a 10-year-old. She stayed up late during sleepovers with her cousin and sister and had a memorable outing to the trampoline park Sky Zone, where she jumped around until she was “red in the face,” she says.
Her family is most thankful for these somewhat ordinary and also lighthearted days for their fourth-grade, sweet-spirited daughter, who lives with a rare metabolic disease called cystinosis, which affects approximately 500 people in the U.S. and about 2,000 people in the world.
Every day, it takes an extraordinary effort from both Josie and her parents to take and administer a number of medications around the clock, with doses that could nearly fill an entire table, to treat this condition.
In addition, she also uses special prescription eye drops called Cystaran multiple times during the day to dissolve corneal cystine crystals in her eyes and relieve photophobia, pain or discomfort in the eyes due to light exposure.
While some of her medications can really taste foul, even after being mixed with juice, and also have to be taken at overnight hours – 11 p.m. and 5 a.m. – to meet the four required doses in 24 hours, Josie takes them in stride and is not one to complain. The mature-beyond her years pre-teen knows how vital these medicines are to keeping her healthy.
“It’s just something I have to do,” she said nonchalantly last week at her Zanesfield area home that she shares with her parents, Jim and Jenni, and 14-year-old sister, Jordan.
“I’m used to it; it’s part of our routine. It might not be fun, but if I just take it quickly, then it’s done.”
Read complete story in Tuesday’s Examiner.
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