Rett Syndrome is not an individual sport. It’s a group sport. While each girl with Rett is different and Maggie’s team makeup may be different than others, without a cure, they will all require 24 hours a day support for the rest of their lives. And for that kind of support, a whole team is necessary.
When we were first diagnosed, doctors told us “If she doesn’t use it she will lose it”. If she doesn’t use her hands she will lose the ability to lose her hands. If she doesn’t walk she will lose the ability to walk. So we assembled a team that would help her fight.
In the spirit of the baseball playoffs – here’s her starting lineup. These are the people we see regularly to make sure Maggie’s health doesn’t decline. These are the people we depend on every week. When something is wrong, these are the people who help us problem solve. Only two of them had significant experience with Rett before they met us. Now, they are all experts.
Daniella – Physical Therapist – 2 hours/week
Uyen – Occupational Therapist – 2 hours/week
Deandra – Speech Therapist – 2 hours/week
Jeff – Neurologist – 2 days/year
Barbara/Melvin – Vision Therapist – 1 day/year
Susan – Communication expert – 2 days/year
David – Cardiologist – 1 day/year
Shelly – Caregiver – 3 days/week
Karen/Judith – Horse Therapist – 1 hour/week
Joanne/Heather and her Pre-K team – 5 days/week
Alyse – Swim Instructor/Behavioral Therapist – 1 day/week
Peter – Pediatrician – 1-5 times/year
Nancy – Orthotist – 2-3 times/year
Rob – Naturopath – 1 time/year
Kim, Tina, Lyn Dee and her IEP team – 2 times/year
It’s sad that any kid needs a pediatric neurologist. And sad when kids need pediatric cardiologists. Maggie needs both of those and a team of 13 more. Those are just two people on this one little girl’s team!
Look, I recognize this team is a little absurd in its magnitude. But each and every one of them is necessary. And if we stopped going to see one, we would see the negative impact quickly. In fact, there are still more interventions we’d like to do, but the time to do that simply does not exist.
So instead, we’ll cheer on the team. But we’re not cheering them on from the sidelines at all. We’re in the huddle, drawing up plays. After all, this is not an individual sport. It’s a group effort.
And now that includes each and every single one of you.
This is the email I sent to all of the team above the night that we got diagnosis, but I realize that you’re also part of her team, so I wanted to share it with you as well.
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I know that we just got some brutal news about Maggie, and I wanted to write to say thank you for all the help and love you guys have shown her.
This isn’t easy. But it isn’t over. There are miracles that happen every day. We just have to be one of them. With your continued support, I believe we can be. Jenny put it best when she said “life can change in an instant. It’s what you do with that change”. And we’re going to do absolutely everything we possibly can with this change.