This year, Nora turned 5! She is making amazing progress.
- Nora is full on having conversations with us! She's starting to express how she is feeling, loves to tell us about her day, and join in conversations.
- Again, her balance is continuing to improve! She can walk down stairs without much help.
- She LOVES to jump. She will jump with both feet toward us when we pick her up from camp and school. She can also jump down from the stairs!
- She still loves arts and crafts! She has made big gains in her fine motor skills with drawing.
We are thrilled with her progress, and we would be remiss if we didn't talk about struggles too:
- Nora still struggles with visual transitions. She is great in places she is familiar with, but she still trips over things easily and can't see in her lower field of vision.
- Eating is still very hard, but we are making great progress with trying new things.
- She likely has autonomic dysfunction, but the nature of which is hard to track down, understand, and diagnose.
- She easily gets dysregulated, which leads to really difficult moments in trying to help her.
These struggles (plus more) are why fundraising for Malan Syndrome research is so important. We want to keep moving the needle forward in understanding what our sunflowers are experiencing, and coming up with plans to best support them.
We know a lot of people love and support Nora. Thank you for being a part of Nora's community!
