When KCNQ2 Mom Holley Moseley decided to write the story of her daughter’s harrowing odyssey from desperately ill child to cheerful teenager, she knew exactly what the title had to be.
“She’s my Ray of Hope.”
Ray of Hope tells the story of RayAnn Heller, a little girl born with rare genetic epilepsy KCNQ2.
RayAnn is also a born fighter, blessed with a mom who has backed her every step of the way. Ray of Hope is a story of drama and serendipity, of love and hope and what it means to be a family.
It’s also a story of how hard it is for families when a child suffers uncontrolled and lengthy seizures.
Holley says RayAnn took a powerful cocktail of anti-epileptic drugs but grew worse and worse. Holley says she was told to prepare for the unthinkable; they might need to say goodbye to RayAnn.
Instead, Holley wanted to say goodbye to medicines she believed weren’t working.
“I’m a nurse. I’m accustomed to taking doctors’ orders. But I’ve learned you have to trust your gut. You’re with your child all day every day. Doctors only see snapshots. Sometimes you need a second opinion. Or a third or a fourth.”
Holley realized there might be another path for her oldest daughter when she saw Weed, Dr. Sanjay Gupta’s documentary about medical cannabis.
Could this be the answer for RayAnn?
The first step was to gain legal access to the drug in their home state of Florida. Holley and RayAnn were among those who lobbied the legislature. In 2014, RayAnn was a poster child for the Compassionate Medical Cannabis Act. She had her picture taken with Florida Governor Rick Scott.
Holley says RayAnn received her first dose of what the family calls her “special medicine” on September 19, 2015, at 6:17 am. “I recorded it, the way I keep track of all her milestones.”
They took things slowly, under a doctor’s supervision. “Today, RayAnn is down from four anti-epileptic drugs to a small dose of one anti-epileptic drug and her “special medicine.”
Holley says RayAnn hasn’t had a seizure in more than a year and that her speech and understanding have increased. These days she uses her lobbying skills in a new way – to make sure she can volunteer with her youth group at the family’s church.
Each child’s journey is unique. There’s no guarantee that a medicine which works for one child will work for another. But Holley explains she wrote the story of her family’s search for answers so that RayAnn could be a Ray of Hope for others.
Holley Moseley spoke at the KCNQ2 Cure Summit on September 15, 2018.
To learn move about her book or purchase a copy click here