Jaxton Timothy has a big toothy smile and a giggle that warms your heart! He is filled to the brim with love and pure joy, and will immediately befriend everyone he meets. Jax loves monster trucks, construction vehicles, Blippi and playing with his cousins. Despite challenges he encounters daily due to Dravet syndrome, Jax is the boy who awakes following a status tonic-clonic seizure to greet paramedics and nurses with a joyful, “hi”! Resilient beyond measure, Jax does not let his seizures take away his ability to enjoy every little moment in his life.
Jaxton had his first seizure at 5 ½ month old. The first seizure lasted over 45 minutes where he was transported to UNC Chapel Hill. Jaxton then began to have myoclonic seizures in 45 minute clusters multiple times a day. At 7 months old Jaxton had his next generalized tonic clonic seziure lasting 30 minutes while visiting family in New Jersey. He was immediately transferred to Children’s Hospital of Philadelphia where genetic testing was done. While waiting on results, Jaxton had a 1 hour and 45 minute seizure that paralyzed him for a brief time. It was after that seizure that the results of Dravet syndrome came in. We picked up and moved from North Carolina to Pennsylvania to be a part of the ENGIN team (Epilepsy Neurogenetic Initiative). It is here where I found hope that one day, there will be a cure and nobody will have to endure this battle any longer.
Jaxton has had myoclonic, atonic, focal, hemiclonic, absence, tonic and grand tonic-clonic seizures in his short life. He is triggered by touching cold water, illness, lights, the sun, the heat and excitement. If my toddler is too happy, he will seize. He would often wake for hours a night every night, he experiences both fine and gross motor delays, he has delayed speech, hyperactivity, migraines, and a sensory processing disorder. Through all his challenges, he smiles through it and is a happy and loving toddler.
Dravet syndrome has made us appreciate each small moment in life. If he gets to have a normal day at the park without a seizure, we are filled with joy. If he goes swimming in the pool, I’m overwhelmed by happiness. Our family has gained a new perspective on enjoying each joy life has to offer. Our goal is a life where we can continually enjoy these moments. They deserve a life without Dravet syndrome and we will continually fight this fight for all Dravet syndrome warriors.
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