When I was pregnant with my son Memphis prenatal scans showed that he had only one kidney. Doctors weren’t too worried at first. They said the other kidney was probably hiding. They didn’t think there was anything to worry about.

I wasn’t prepared for what happened next. As soon as Memphis was born, he was rushed to the NICU.

Something was very wrong with my baby boy.

Within 12 hours, Memphis was diagnosed with a rare condition called Goldenhar syndrome. Children born with Goldenhar syndrome have underdeveloped bones and muscles on one side of their bodies. These children can sometimes also have underdeveloped or missing organs on the affected side. In Memphis’ case, he was missing his lower right jawbone and was deaf in one ear and he was born with only one kidney. Thankfully, most people can live a perfectly normal life with only one kidney.

But as time went on, Memphis kept getting sicker and sicker.

We traveled back and forth between Sault Ste. Marie and Toronto. If you’re not from around there, that’s a drive that takes over 7 hours each way.

It wasn’t until Memphis was three years old that doctors finally diagnosed the problem: his remaining kidney wasn’t working as it should. Memphis had chronic kidney disease.

As you can imagine, navigating his kidney condition has been a never-ending rollercoaster of emotions. Sometimes it feels like we’ve overcome one challenge, only to be thrown for a loop with another health scare. But we're determined to live in the moment and enjoy what we can. We’re still hanging on.

Even though he always needs me or his dad by his side at all times, Memphis loves doing normal kid stuff like fishing in the lake by his grandparent’s cottage and playing games outdoors.

Nothing is more important to me than Memphis knowing there’s a community of caring people standing behind him. That he’s not alone.

And it helps me so much as his mom to know I’m not alone. The Kidney Foundation has been an incredible lifeline.

Being invited into a peer support group made such a difference. Thanks to the doctors the group brought into speak to us and the experiences of other moms, we caught the signs of Memphis’ hypertension early. After learning more about this condition, I was able to ask the right questions at our doctor’s visits.

While Memphis’ future is unknown, having an idea of what we might encounter helps put my mind at ease. There are fewer surprises, and it’s a huge relief to feel ready for anything that could come our way.