Jaydne is 18 years old and lives in Clarksville, Tennessee. She was diagnosed with Syngap1, in June of 2019. SynGAP1 had not been discovered yet at the time of her initial genetic testing in 2005. Jaydne has Lennox-Gastaut Syndrome. Her seizures are well managed now, rarely see any seizures at all, with Epidiolex and Onfi. At its worst, she seized near constantly (100+/hr)--mostly atypical absence but also absence, myoclonic, and atonic drops. Eating has always been the biggest trigger for seizures. First noticeable seizure was an absence seizure at 7mos old. By two years old, atypical absence seizures were rapid firing.
Jaydne loves being the center of attention. She loves dancing, singing, jokes, art, basketball, photography, and baking. Her favorite people are her mom and CNA. She loves her dog, Gator, who she calls "pumpkin head". Jadyne has a magnetic smile and contagious laugh. She loves getting down to girl power songs like "Shake It Off" (Taylor Swift) or "Roar" (Katie Perry). Turn the Frozen soundtrack on Alexa and sit back to watch her sing and perform an accurately choreographed rendition of the entire movie, yet we're still learning to count to 10 reliably (SynGAP1 is fascinating). This gregarious girl would love to party every single day. The hospital and doctor's offices are some of her favorite places to visit because everyone is always so kind and doting, and Jadyne craves an environment that treats her like the princess she clearly knows she is.Tim Tebow's Night to Shine is her favorite night of the year, and Christmas is the morning for which she waits all year. The world is a more colorful one with her in it and her love of art and makeup. Jadyne really hopes for a life that includes appropriate supports so she can visit Walmart, go to parks and the zoo, go swimming, and explore what the world has for her. In the spring, she loves planting flowers. In summer, you'll find her outside, face up to the sky, catching the pouring rain on her tongue. She loves playing in the autumn leaves, and the winter snow brings on many outdoor performances of "Let It Go". Jadyne truly appreciates being included and having her independence honored. She was born for greatness. Even animals can sense it, and they all seem drawn to her. We often say, "It's Jadyne's world, and we just live in it." We can't wait to see what she has in store for us next.
We can use your help to raise awareness about SynGAP1.