It was at Aidan’s 7-year checkup where we grew more concerned with his growth. Aidan had grown one inch and gained only one pound in the past year. Following recommendations from his pediatrician, we met with a nutritionist (who altered his diet), checked his thyroid and began giving him protein shakes. After what seemed like a second job, Aidan managed to gain three pounds in the next six months. While this satisfied his pediatrician, our gut told us there had to be something more to it. We saw a GI specialist in September of 2020 who ordered labs and completed an endoscopy. I will never forget her words. The words that likely helped save our son’s life. If I’m going to poke a kid, we might as well check for everything. Aidan’s first labs came back showing elevated BUN and creatinine levels. We ran a second set of labs, high again. At that point we scheduled a renal ultrasound. When the GI specialist called with the results, that Aidan had multiple cysts in his kidneys, we were still naïve to the meaning of all of this.
On September 25, 2020, we met with a nephrologist at Rush University. She informed us that Aidan had Stage 3 Chronic Kidney Disease. She couldn’t tell us much in terms of timeline or prognosis because we had no idea how long our little man had been silently battling this disease. One thing she did know for sure, was that Aidan did not follow the typical progression. She stated that kids are usually diagnosed in utero or into their teen years.
From that point on, our lives were forever changed. In the past 5-6 months, we have transferred care to Lurie Children’s, undergone genetic testing, completed countless labs and administered endless medications and shots. Unfortunately, Aidan’s kidney disease quickly progressed to stage four. It is at that point that kiddos need to start preparing for transplant. Aidan was evaluated, approved and listed inactive on the transplant list by the end of 2020. Inactive only because we were hopeful one of us could be Aidan’s live kidney donor.
On February 1st, Christine had a full day evaluation at Northwestern and completed testing in hopes of being approved for live donor transplant. On Monday, February 22nd, our prayers were answered. Aidan could receive his mother’s kidney. The next day the transplant nurse coordinator called with a date: April 5th. In preparing for Aidan’s upcoming transplant we are filled with so many emotions. Relief. Hope. Faith. But also anxiety and fear.
When looking at Aidan and thinking back to his 8, short years of life, you would never have known the battle within. His pint-sized stature was always accounted for by his equally short mom. Aidan is a sweet and funny boy who loves school, video games and golf. He has since shown us just how resilient and brave he also is. We are hopeful his new kidney will provide him greater health and more opportunities and years in life. But we are not naive to the facts. This transplant does not cure his kidney disease. You are replacing one medical issue with another, we were told. Aidan will come home on ten different medications, including immunosuppressant drugs, which he will need for the rest of his life, to hide his new kidney from his body. But he is also so young that he will likely need another transplant in his life.
Our family has partnered with COTA to raise money in honor of Aidan for a lifetime of transplant-related expenses.
The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.