As I think you all know, life changed drastically for me this past year with nothing more significant than Madison’s diagnosis of Rett Syndrome. I immediately began researching ways to improve her life, where the top care for her could be found and when I discovered just how rare the disease was, I started searching for anything and everything Rett related.
I found that there is only limited specialized support for Rett Syndrome in Canada outside of Ontario, however there are 19 clinics in the United States that specialize in Rett Syndrome. Perhaps it’s because we live in the West, but I began hearing that Katie’s Clinic (a part of the Oakland Children’s Hospital) was the best one.
Then I met Brooke. She was the first Rett parent I became friends with on Instagram and just happens to live a few hours away from Oakland. She has been to Katie’s Clinic several times with her own daughter, Korrie. Over the past year, Brooke and I have quickly become good friends as we’ve discovered we have so much in common. Even our family size was identical (up until a few weeks ago) with two boys and a girl with Rett. Korrie and Madison seem to be virtually identical, and I wish so badly we lived across the street from Korrie. They are only a few months apart in age, and the severity of the disease in both of them seems to be very similar. This gives us a lot to talk about and somewhere in there one day it was decided that we needed to meet up in real life - ideally at Superior Dairy for a "scoop" or 34 of ice cream.
This is a long shot goal. I’m honestly not sure if it will happen in 2020. It’s a big trip. A 20 hour, two-day trip each way! But if I don’t write out a goal like this, then improbable quickly fades to impossible and it will never occur. But it helps that there are two big reasons to make the trip. It would be amazing to meet the team of doctors at a specialized Rett Clinic like Katie’s. And then it would be so much fun to meet another family like Brooke’s who are at the same point in life as we are.
Ya never know, right? I’m leaving this one on the list and we’ll see what happens.