Donate for Aidan O’Leary
Aidan’s Army – In Celebration of Mike O’Leary’s Retirement
By Matilyn Ozment, Redi-Rock International
A few things I’ve learned about Mike O’Leary after working with him for more than two years are that he’s extremely hard working, driven, passionate, loving, and giving. He’s always there to give advice, give feedback, give his time to help, and the list could keep on going. But the most prominent “giving” example I can think of is what Mike has given to the charities he is passionate about.
When we thought about how we could honor Mike and his retirement, we knew the most meaningful gift we could give him would be to rally together and raise money for a charity near and dear to Mike. Mike deeply loves his family, especially his grandson Aidan (which you probably know if you’ve spent at least 5 minutes with Mike). Aidan was recently diagnosed with a rare disease called cystinosis.
Mike has been a core part of Redi-Rock International for many years, and has made a huge impact on my life, and I’m certain many of your lives as well. Let’s work together to raise money to help find a cure for cystinosis for Aidan and the other children who are affected by this terrible disease.
Along with your donations, Redi-Rock will be matching up to $5,000, so let’s rally together and show Mike how much he means to us!
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, energy level and his overall demeanor. 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 leading to widespread tissue and organ damage. The kidneys are typically affected first leading to Fanconi Syndrome, which causes a severe electrolyte imbalance because the body can’t absorb essential nutrients. As you can imagine, this can have adverse effects on growth and development, requiring frequent monitoring and adjustments.
The doctors warned us that this disease requires more medication than nearly all other known diseases, and they were not exaggerating. Aidan takes more than a dozen medications every day. He has a limited appetite but does enjoy some food by mouth—especially mac and cheese. We also feed him a blended diet using his gastrostomy tube to ensure he gets proper nutrition in order to grow.
Thankfully Aidan was diagnosed before his first birthday, which is relatively early. So far, he has preserved most of his kidney function. His rigorous medication, feeding, and electrolyte replacement regimen has enabled his body to stabilize.
We are ecstatic to report that he has already started growing again!
It truly 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 is walking and talking just like other 14-month old children. He especially loves his puppy Gus and causing just enough trouble to keep us on our toes.
Our family is happy, positive and strong. Little Aidan’s nearly permanent smile is infectious, and we are thankful that he’s doing so well. However, our journey with this disease has just begun. There are so many unknowns, and there is currently no cure for cystinosis. While his treatment slows the progression of the disease, it must be frequently adjusted and often has 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 with eliminating this terrible disease.
Erin and Jim O’Leary