This post is by Nora Fitzpatrick, the 2012 Washington DC Walk Co-Chair and an energetic advocate for children in the DC metropolitan area. Please Support Rory's Rovers!
This year has been a good one for Rory, especially after the difficulties she experienced in 2011 with repeated strep infections. She’s happy and healthy and enjoys school, gymnastics, movie making, and staff meetings with her stuffed animals. She also somehow figures out how to play her favorite songs on the piano. She’s amazing.
We are so fortunate to live in a place with fantastic doctors and fabulous services in the Montgomery County public schools. Rory’s teachers are hardworking and truly devoted to their students. If we lived anywhere else, Rory’s services might cost $50,000 in out-of-pocket expenses.
Just this week, Rory started taking religious education classes at our parish with two of her buddies. A wonderful friend volunteered to teach the class. After reaching out via the church bulletin for assistance, more people offered to help. Rory’s class has one teacher, 3 aides, one occupational therapist, and high school student and middle school student as well. This is a picture of the prayer that they say at the start of every class. The communication symbols help the kids learn what the words mean. Hopefully in a few years, Rory will receive her First Holy Communion.
Rory is being treated for a folate deficiency in her spinal fluid that was discovered as part of the autism study she was in at NIH. They also discovered that Rory has extremely low cholesterol. So low, it’s like she’s not getting any fat in her body. And this is apparently common in children with autism. What does this mean? We don’t know but we are hoping to get Rory into the NIH cholesterol study to learn more.
We are about as lucky and blessed as anyone can get. Rory is well, happy, and learning. But we want to find out more. What causes Rory’s autism and what can we do to make her life better? That is why we support Autism Speaks, volunteer for them, and work to raise money that funds science so we can get more answers.
Please consider supporting Rory’s Rovers at the 2012 DC Walk Now for Autism Speaks. You can help Rory, and the other 1 in 88s.