Aidan O'Leary's Story
February 28, 2016 was the best day of our lives—it was the day we welcomed our beautiful baby boy, Aidan James O’Leary, into this world. Aidan seemed healthy, vibrant, and energetic right from the beginning. He continued to thrive until about eight months, when we noticed some drastic changes in his eating habits, growth, and energy level. After countless trips to the pediatrician, an emergency room visit, and a grueling month-long stay at Lurie’s Children’s Hospital, our little Aidan was diagnosed with the rare metabolic disease, Nephropathic Cystinosis.
Cystinosis causes an abnormal accumulation of the amino acid cystine in the body’s cells that can lead to widespread tissue and organ damage. The kidneys are typically affected first – leading to Fanconi Syndrome – a condition that causes a severe electrolyte imbalance because the body is unable to absorb essential nutrients. As you can imagine, this can have adverse effects on growth and development, therefore his electrolytes must be frequently monitored and supplemented.
The doctors warned us that this disease often requires more medication than nearly all other known diseases, and they were not exaggerating. Aidan takes eighteen medications every day. His appetite is variable – mainly as a side effect of his medications – therefore we also feed him a blended diet using his gastrostomy tube to ensure he gets proper nutrition and continues to grow.
Thankfully Aidan was diagnosed before his first birthday – which is relatively early – and he still has most of his kidney function. With his rigorous medication, feeding, and electrolyte replacement regimen Aidan is not only stable but thriving!
It amazes us that despite everything he has been through, Aidan wakes up every day with a huge smile on his face, happy to conquer another day. He especially loves his puppy Gus and causing just enough trouble to keep us on our toes. Little Aidan’s nearly permanent smile is infectious, and we are thankful that he’s doing so well. Our family is happy, positive and strong.
But we also realize that our journey with this disease has only just begun. There are so many unknowns, and there is currently no cure for cystinosis. While his treatment slows the progression of the disease, his medications must be frequently adjusted and have many adverse side effects.
We are hopeful for the future, mainly due to the outstanding and very promising work being funded by the Cystinosis Research Foundation. We truly believe in our heart of hearts that a cure will be found, and soon.
Please join Aidan’s Army as we fight to find a cure for cystinosis. We are forever thankful for your help.
Erin and Jim O’Leary