3 years old
Highland, California
Warrior #231
Sienna was born on February 12, 2023, a week past her due date. She just wasn’t ready yet, but I had to be induced. About 19 hours later Sienna was born. She’s a happy girl, and did everything that seemed normal until her 8 month check-up when her doctor asked if she was meeting milestones and she was not. We were referred to physical therapy, and at 11 months she finally started that. She had a very hard time, and was still not meeting any of her goals set at therapy. We told her primary doctor that we noticed other abnormalities with Sienna so we were referred to Neurology.
Then we noticed her eye flutters and head drops. Her neurologist ordered an EEG reading that came back inconclusive, an MRI was okay, and we had a genetics test done. It took about 6 weeks and we got the call back from the genetics doctor that Sienna tested positive for SYNGAP1-Related Disorders. We learned so much that day and that week I joined the CURE SYNGAP1 Facebook group and other SYNGAP1 groups. The community has been so helpful and supportive.
Sienna has had more EEG readings since and of course was diagnosed with Myoclonic seizures. She has had many hospital visits due to illness, many therapy sessions for OT, PT, and speech. We even made the drive up to Stanford Children’s Health to get a second opinion but I saw it as more help and information. In 2025 she had a g-tube placed for failure to thrive. She was having a very hard time chewing and swallowing food.
She is currently enrolled in the home and hospital program too. She is non-verbal and does not crawl or walk, but she has progressed in her ways – she is just taking her time. She is a very strong little girl who has gone through so much in her 3 years of life so far. We have so much support from our family and friends, including her doctors and strong faith that one day there will be a cure for our happy girl and many others.
