I’m getting to the point where I dread Katy’s birthdays.

I know that sounds horrible; but right now that’s how I feel. Just before Katy’s second birthday, she was diagnosed with cerebral palsy. Just three days after her third birthday, she was diagnosed with her chromosome deletion. A couple of weeks before her fourth birthday, Katy began holding her right foot in that strange position that we still can’t figure out. And now, four days before her fifth birthday, our little girl suffered her first documented seizure.

We’d been told if we got past the five-year mark without any seizures, we would be in good shape. In fact, we were talking with a couple during our all-too brief vacation last week about their granddaughter who has Angelman’s Syndrome. They had mentioned the same thing and how their little girl had ended up having her first seizure just five days after her fifth birthday. This shouldn’t have come as a complete surprise to me; we’ve known since Katy was two that there was possible seizure activity in her brain. Now, though, that activity is right in front of us and we have to confront it. Neurology appointments are in the process of being scheduled and we have another EEG in our future. I guess there are just times when you wish we could catch a break.

Now that I’ve just written and re-read that last line, I want to delete it. There are so many kids out there suffering a lot worse than Katy that I know it sounds petty; but I’m going to leave it up there to remind me to be thankful for what we do have and for what Katy has been able to accomplish.

In that spirit, we do want to share some exciting news. For the first time we’ve found another child in America with a deletion that nearly matches Katy’s! Hailey lives in Southern California and will be four in May. Her deletion is at 6q13-14. (Quiz time: what’s Katy’s? 6q13-14.2) What is really interesting is that Hailey is experiencing (or has experienced) many of the same issues we face with Katy, including hip dislocation at birth, bladder problems, strabismus, speech issues and general delay. A couple of other similarities include the observation that Hailey, like Katy, said “Mama” and babbled at just a few months of age but then went silent again and she also relies on sign language for a majority of her communication. Like us, her parents have also gone through multiple doctors trying to find answers.

Hailey is walking on her own, though! And that’s the hope we’re going to end on today.

Trust in hope,
Todd and Shel