Eight-year-old Ayla Maher and her 5-year-old brother Otto Maher are recipients of an AAKP Cystinosis Scholarship. They are using the funds to attend Mass Audubon’s Nature Camp.
Ayla Maher was diagnosed with cystinosis when she was just two and a half years old. She was previously featured in an aakpRENALIFE article on the Cystinosis Scholarship Program in 2021 when she attended an art summer camp in Boston
(Read at: https://bit.ly/AAKParticle-AylaM). She has continued to attend camps each year and has chosen nature camps for the past two years.
Her younger brother, Otto Maher, was diagnosed with cystinosis when he was only a year old after being monitored for this rare genetic condition since birth. This is his first year attending a camp with support from AAKP’s scholarship program. Dad, Tim Maher says, “Otto was nervous about attending camp at first but after just the first day, he was a big fan!”
Ayla and Otto are in different camp groups but get to see each other throughout the day. The camp includes plenty of outdoor time looking at nature, insects, and animals. The children also make art, play games, and learn songs.
Tim shared that both Ayla and Otto’s health has been good this year. Ayla recently had to increase her medication, but she is doing well with the change. Sending them to camp, he worried about hydration and sunburn. He explained that the camp needed to administer their eyedrops a couple times a day, keep an eye on their hydration, and when they got nauseous give them Zofran and/or a place to rest.
This upcoming school year, Ayla will be going into 3rd grade and Otto will be going into kindergarten. Tim says, “School is an area where they shine.” The kids enjoy learning and sharing with the family what they have learned each day.
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 support people living with cystinosis by providing scholarship opportunities to further their education, 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 by downloading the scholarship application: bit.ly/AAKPCystinosisScholarship.
