Amalia’s Kidney Journey: A Mother’s Perspective
When our daughter Amalia was eight months old, we knew something wasn’t right. She was suddenly losing weight and refusing her bottles. What began with a visit to her pediatrician and routine bloodwork quickly became a series of hospital visits and tests. We spent weeks at SickKids searching for answers.
Then, in July 2025, we finally got one. Amalia had an ultra-rare kidney disease called renal tubular dysgenesis. At the time, there were only about 20 cases described in medical literature. Our doctors told us something that has stayed with us ever since: “Amalia is n=1.” She is unlike any other child they had cared for with this condition. There was no clear roadmap for what her future would look like. Instead, Amalia would have to write her own story – and we would learn to read it alongside her.
Because Amalia’s kidneys didn’t filter potassium, she required specialized formula, a low-potassium diet, careful hydration and ongoing monitoring. Just before her second birthday, she also received a gastrostomy tube to help ensure she gets the nutrition she needs. While her kidney disease may no longer be visible, it remains part of our everyday lives.
In the early days after her diagnosis, I was overwhelmed. I needed to understand what kidney disease meant for my daughter and for our family. I reached out to The Kidney Foundation and within hours, someone called me. One of the first things they told me was, “kidney disease is not a death sentence.” Those words gave me hope when I needed it most.
Through the Paediatric Caregivers support group, we connected with other parents who understood the uncertainty and challenges of raising a child with kidney disease. We found information, encouragement and a community that reminded us we were not alone.
Our first Kidney Walk was in 2025. We brought together family and friends and formed “Amalia’s Kidney Krew.” This year, we’ll be back for our second Kidney Walk. For our family, the Walk represents so much more than a fundraising event. It is an opportunity to come together with a community that understand our journey and to help raise funds for research, better treatments and improved outcomes for children and families living with kidney disease.
To other parents navigating a kidney disease diagnosis, my message is simple: “You are your child’s strongest advocate. We know our children better than anyone, and it is important to empower ourselves with as much knowledge and information as possible. Ask questions, seek out resources, speak up when something doesn’t feel right, and don’t be afraid to advocate for what your child needs.
You don't have to be a medical expert—you just have to be willing to learn, ask questions, and stand beside your child every step of the way”
Amalia is still writing her story, one day at a time. Our hope is that she continues to grow, play, swim, laugh and experience all the joys of childhood. And wherever her story takes her, we’ll be right there beside her.
