It’s been five years since our Cystinosis journey began and there’s certainly never a boring day. One of the biggest gifts for our family was welcoming our beautiful baby girl, Maeve Isabelle O’Leary, in November 2019. She has brought so much love, laughter, and chaos to the O’Leary household. Aidan is a very proud big brother, and it is absolutely wonderful to see them play, learn, and grow together. We feel thankful as our family’s bountiful blessings outweigh the many challenges associated with having a child afflicted by a chronic disease. 

Just when our sea had settled a little bit, the pandemic was thrust into our reality. COVID created new challenges, and we struggled to find the right balance of protecting Aidan’s health and also letting him and Maeve just “be kids”.  We found a new home and decided to move out of the city and into the suburbs for some much-needed extra space … having a backyard is glorious!

It’s hard to believe that Aidan just turned six years old. He is currently finishing up his Kindergarten year and is doing great! His current interests include baseball, ninja warriors, and Wild Kratts. He is such a bright light with an unbelievable imagination and insatiable thirst for knowledge. He can be shy when he’s outside of his comfort zone, but once he settles in, his energy and endless questions will make your head spin! He is our hero, and hands down, the strongest person we know.

Life with Cystinosis is hard, and the endless worry of what’s going to happen next is scary.  There are so many factors completely outside of your control, and the medication burden is a beast. We’ve found a medication schedule where Aidan rarely vomits anymore, but it’s quite laborious starting at 6:00 am in the morning and ending at 11:30 pm at night. Our family tends to just pour ourselves into the present, trying to keep Aidan as healthy as possible until better treatments are available. This can be exhausting at times, but we are truly blessed to have wonderful family, friends, and medical professionals supporting us.

Overall, his health is very stable, and his growth has been fantastic – reaching the 55% percentile for height. He truly is thriving, and we are extremely hopeful with all the impressive research and medical advancements being funded by the Cystinosis Research Foundation.

We have always believed that one day Aidan would be cured of this terrible disease, and the CRF is currently making this belief our reality. Thank you to the Stack family for your unyielding leadership and thank you Stephanie Cherqui for your tireless efforts in finding a cure.

For everyone in Aidan’s Army, we cannot wait to get back in full swing with you in 2023 with our annual charity event. Thank you to all of our amazing donors for your generosity and for helping cultivate better treatments for all those afflicted by Cystinosis. Our family is forever grateful for your continued support.

Love, 
Erin and Jim O’Leary