0
Ensenada, Mexico
2 years old
January 26, 2022

Luna

Luna's journey to find a diagnose started when she was 12 months, she wasn't meeting milestones so we started looking for answers. After many visits to the doctor, and many studies (MRI, blood tests, etc.) they gave us a diagnose, little did we know it was a misdiagnose.

Nonetheless, Luna started physical therapy right away. We kept living our lives trying to wrap our heads around our daughter's condition, but then in July 2020 Luna started having epileptic seizures, she was diagnosed with epilepsy August 2020. The new neurologist disagreed with the previous diagnose and urged us to get a genetic test done to find a true answer.
In March 2021, we found our answer, Luna was diagnosed with SynGAP1 and so our SynGAP1 story began.

The same day we got our diagnose I was in the phone with Victoria Arteaga, we weren't alone anymore, we had found our community.

Luna is such a bright light in our lives, her smile and laugh are so contagious. She loves music, she enjoys when people clap for her and she loves to get recognized when she's doing a good job. We are lucky enough to live close to the ocean and she loves it, she enjoys playing with sand the most.

She is about to turn 3 years old next March, and with a lot of therapy she's making a lot of progress, almost standing with no support. Every inch stone counts with us, and we are very hopeful for the future, even though there are bad days just one look at Luna's smile makes it all worth it.

We Need Your Help

We can use your help to raise awareness about SynGAP1.

© Copyright  2018-2021 Syngap Research Fund  | All Rights Reserved | 
Privacy Policy
RegistryNewsletter
0