Miriam and Daniel Burrows share about their three-year old daughter Cordelia, who was diagnosed with Rett Syndrome in August of 2017, to help others learn more about how this disorder has impacted their life. Rett Syndrome is a rare postnatal genetic neurological disorder that occurs almost exclusively in girls, caused by a mutation on the MECP2 gene. This mutation leads to severe impairments which impact nearly all aspects of an individual’s life. Symptoms generally start to emerge between 6 to 18 months of age. Typically, the skills a child has acquired associated with motor development will stagnate, and eventually start to regress.
Cordelia’s parents discuss the joy their daughter brings to their life, as well as the challenges they anticipate as she gets older regarding their home and participating in the community.
Location: Staunton, Virginia, United States
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Notable quotes from the interview:
She probably won’t talk with her mouth, but she talks with her eyes with her eye gaze device. She probably won’t walk. She gets around by way of us. -Miriam
You know, just knowing that she’s a whole, complete, wonderful, lovely person, and that you know, just that she’s thinking in there. -Daniel
I do think that Cordelia having this disability has allowed him to rise to the occasion; he is just such a great big brother, and sees the world differently than other kids do because of this, in such a more compassionate way. -Daniel talking about their son, Clark.
In order for her to access information or explore her world, we have to bring the world to her, all of the time. Every day. And that is work. If she’s curious about what something feels like, she’s not going to be able to get to it. If she’s curious about what something tastes like, you know kids are always exploring things, falling on things. She’s not doing any of those things. So we have to constantly bring new things to her. Pictures, and vocabulary, and textures and sensations…you know, all of those things, and that is…uh, you have to do it every day. Because she can’t reach those things herself. -Miriam
She’s very smart. And she gets jokes. And she likes music. She will continually pull up the piano, just to play little notes. She listens to certain music. She’ll pull it up and she giggles. -Miriam