Ayla Maher was diagnosed with cystinosis when she was just two and a half years old. Ayla is now five years old and loves to play, read, work on puzzles, and especially loves creating art!
Ayla’s parents, Tim and Amelia, heard about AAKP’s Cystinosis Scholarship Program from a patient care manager at Horizon Therapeutics and decided to apply for a scholarship so Ayla could attend summer art classes at the Museum of Fine Arts in Boston. “Ayla is always doing artwork at home and asking when she can start school,” Tim said. “We thought this would be a good opportunity for Ayla to do both.” The week-long session is for children ages 5 to 11 and is a full day from 9 a.m. to 4 p.m. In Ayla’s small group of five to seven-year-olds, she learned to draw, paint, sculpt, collage, print, and more.
Ayla’s parents were a little nervous about sending Ayla to full day classes at first, worrying that she might have stomach issues relating to cystinosis. However, they happily report that Ayla loved the summer art classes and did wonderfully. The classes wore her out and she often fell asleep on the car ride home, but had no issues with her health. Tim said, “Ayla was so happy to go to a real classroom and have a real art teacher.”
Needless to say, Ayla brought home lots of beautiful artwork, some of which her parents shared with AAKP for this article. Ayla cannot wait to attend summer art classes again next year, but up first is Kindergarten this fall. Additionally, Ayla’s little brother, Otto, who also has been diagnosed with cystinosis, is looking forward to turning five years old so he can attend summer art classes just like his big sister.
ABOUT AAKP’S CYSTINOSIS SCHOLARSHIP PROGRAM
While a variety of factors may cause an individual to be diagnosed with kidney disease, genetic and rare causes can be especially difficult for patients and family members to manage. Understanding the need to support individuals who have kidney diseases caused by a genetic or rare condition, AAKP has expanded its education, advocacy efforts, and services to those affected. In support of AAKP’s Pediatric and Rare Disease Initiatives, AAKP is pleased to offer the AAKP Cystinosis Patient Education and Activity Scholarship Program for those affected with cystinosis.
Cystinosis is a rare genetic, metabolic, lysosomal storage disease caused by gene mutations which result in an abnormal accumulation of the amino acid cystine in various organs and tissues of the body such as the kidneys, eyes, muscles, pancreas, and brain. The cystine accumulation causes tissue and organ damage. Cystine accumulation can lead to kidney failure, muscle wasting, swallowing difficulty, diabetes, hypothyroidism, cerebral atrophy, photophobia, blindness, corneal ulceration, ventilatory impairment, and more. Without treatment, children with cystinosis will usually develop end-stage kidney disease (ESKD) or die prematurely. If cystinosis patients receive a kidney transplant, their new kidney will not be affected by the disease. However, without specific treatment, cystine accumulation can cause complications in other organs of the body.
The objective of the scholarship program is to provide an exclusive opportunity for people living with cystinosis to provide inspiration, further their education, and pursue opportunities toward long-term career goals and life aspirations. This scholarship program is open to individuals diagnosed with cystinosis. Scholarship funds are available to age groups 5-17 years of age and 18+. Scholarship submissions are accepted year-round, however scholarships are awarded in November and June. Learn more and apply today by downloading the scholarship application: bit.ly/AAKPCystinosisScholarship
This article is from aakpRENALIFE magazine, July/August 2021.