Meet Marleigh!
Marleigh’s journey started when she was just 14 months old after a seizure caused her to stop breathing and need CPR. From that day on, our lives changed. Since then, we’ve spent countless hours in hospitals, doctor’s offices, and traveling for specialists, all trying to find answers and the right treatment for her.
She was eventually diagnosed with Dravet syndrome caused by an SCN1A mutation, along with a second genetic mutation. It’s a rare, lifelong form of epilepsy that causes medication-resistant seizures and has also affected her speech, development, balance, and so many parts of her everyday life.
In December, we almost lost her after a life-threatening medical crisis that landed her in the PICU. It was one of the scariest moments of our lives and reminded us just how fragile life can be with Dravet syndrome.
Through it all, Marleigh is still the happiest little girl. She loves music, loves to laugh and has the biggest personality. She has been through more than most people ever will, but she keeps smiling, and we’ll never stop fighting right beside her.
Please keep Marleigh and her family in your prayers as they continue to navigate her care journey.