The story of Peyton

With her first scary seizure at 3 days old, and some pretty routine testing like MRIs, CT scans, EEGs, some genetic testing (Rett, Fragile X), we were told to take a wait-and-see approach with our baby girl and track her milestones.

Unfortunately there weren’t many. No holding her head up, no rolling, no sitting up. In fact the only thing she did on time was blow raspberries.

It seemed like a never ending journey trying to get to the root cause of the the seizures and the global delays. I think the first five years of her life she was tested for 600 different things. The deeper in we got in testing, the scarier the diagnoses were.

By the time she was 8 or 9, I was resolved to accepting we may never know. Seeing the world of special needs, I also knew that sometimes not knowing isn’t a bad thing.

Though not always easy on our little family, on her brother and my sweet boy Jaden, we accepted all of the challenges, seizures, medicine, more medicine, changing medicine, sleepiness nights, tears…inch stones, endless smiles, giggles, innocence, joy, pure love.

Something changed though one day. I got the urge again after an eight day hospital stay with her to try again.

Science moves forward, tests get more sensitive, more genetic anomalies are found…I asked for more testing. Thankfully she has a set of amazing doctors who each have children with special needs. They know the drive I have. we went to Hershey Children’s Hospital in the Fall of 2017.

4 years ago we got the call we had waited for…for 13 years. January 15th, 2018. The day we found we had a tribe waiting for us. Our STXBP1 tribe. Not everyone will understand this, unless you e been in our shoes… It’s so nice to finally belong somewhere.

I love my Rare 💜