Suburban girl in need of kidney transplant after rare diagnosis
JOLIET, Ill. - April is "National Donate Life Month" and one Joliet family feels like they are on borrowed time as they desperately search for a kidney for their teenage daughter.
Life was a symphony for 14-year-old Elizabeth Reyes. The high school freshman was adapting to remote learning and soaking up family time.
Then, this past fall, she was suddenly diagnosed with a rare condition.
"Literally one morning, she woke up and she was limping," Stacey Reyes, Elizabeth's mom said. "Her face fully started to change. It almost looked like her eyes were sort of bulging out of her face a little."
Initially, doctors attributed Elizabeth's low energy and physical changes to a lack of exercise, but results of a routine blood test showed something much different.
Within 48 hours, Elizabeth was diagnosed with end-stage kidney disease.
"End-stage kidney disease in children is extremely rare and if you look at any given time, there's no more than 2,000 children on dialysis in the U.S.," said Dr. Mahima Keswani, Medical Director of Dialysis at Lurie Children’s Hospital.
"There are often very few symptoms of kidney disease before the kidneys are at a very low level of function." said Dr. Rachel Engen, Lurie Children's Medical Director of Pediatric kidney transplant.
Elizabeth has nephronophthisis, a rare genetic condition that is typically discovered at the age of 14. Her type O blood makes finding a new kidney more challenging. Her mother, who shares her blood type, wasn't a match.
The family drives from Joliet to Chicago for the treatment and they have met many other families with children on dialysis, a world they didn't know existed.
"I go to dialysis three times a week, for the session is three hours," Elizabeth said.
Engen said there are about 250,000 children in the United States who are currently living with a transplant.
"Once somebody gets a kidney transplant, we're usually talking about adding 10 to 20 years onto their lifespan," Engen said. "So for some kids it makes all the difference in the world, getting that kidney transplant."
Elizabeth's insurance covers all transplant and recovery costs for the donor.
"At the end of the day, all we need is that new kidney for Elizabeth so we can find our new normal again," Stacey said.
To donate to Elizabeth, you must be between the ages of 18 and 55 with Type O blood. Automatic disqualifications include high blood pressure or if you’re taking medication for blood pressure, diabetes, heart disease, cancer or a body mass index above 35.
If you are interested in organ donation or to help Elizabeth, you can email Kaitlyn White at firstname.lastname@example.org.