Meet Emily-Alexia Leland Photography
Emily doesn’t remember a day when she hasn’t taken medicine. At least twice a day, since she was 12 months old, she has taken medicine. Why? Emily has epilepsy. But not just any epilepsy… Emily has PCDH19 epilepsy.
In 2008, a week after her first birthday, Emily was found in her crib seizing in the middle of the night. She was stiff, not breathing and unresponsive. Ten days later, she finally left the hospital with a diagnosis of epilepsy… Cause unknown.
The next eight years of Emily’s life were “normal” for the most part. She went to school, played with friends, rode her bike, played soccer, practiced karate, joined Girl Scouts and participated in youth group at church. The only hint that Emily might be different from her peers was twice daily anti-seizure medicines and daily naps (long after her peers had stopped napping). When breakthrough seizures appeared, they always occurred in clusters and resulted in hospital stays. Life would be put on hold temporarily but with medication adjustments and time, the seizures would disappear. Life would return to normal.
In 2016, Emily’s seizures changed; they were longer, more frequent and became life threatening. Medicines stopped working. She spent months in and out of hospitals and missed more school than she attended. Side effects from seizures and medicines impacted her coordination, balance, concentration, emotions and her speech. She slept 18 hours a day. More aggressive treatment options were considered. Emily even underwent brain surgery to determine if removing part of her brain would help control the seizures! Nothing was helping and hope was fleeting. In short, epilepsy was controlling her life and life was passing her by.
Despite the stronghold that epilepsy had on her life, Emily chose to look beyond her struggles and wanted to help others. The night before her brain surgery, she chose to cut her long, blonde hair and have it donated to kids who don’t or can’t have hair of their own. Her hair would grow back, but theirs may not. Often times Emily received pet therapy during extended hospital stays. She would beam when a dog jumped onto her bed for pets and snuggles. Knowing how great that felt, Emily and her family helped start a pet therapy program at her local hospital. Last year during her follow-up at Cleveland Clinic, she donated crafts and activities to kids on the Pediatric Epilepsy Monitoring Unit (PEMU). In order to pay for these gifts, she chose to sell her unused toys. Emily is always a light, despite her darkness.
Finally in August 2017, months after her brain surgery, genetic-testing shed light on what was causing Emily’s seizures. A rare mutation of the PCDH19 gene known to cause clustering epilepsy in girls was found in Emily’s DNA. Reading the symptoms of PCDH19 was like reviewing Emily’s medical record! Finally, an answer… a ray of hope broke through the darkness.
The past year has been spent learning about PCDH19 epilepsy and connecting with other families who suffer from the same diagnosis. It is a great comfort to Emily knowing that others understand her challenges and that she is not alone. A cure has not been found yet, but research is ongoing and hope prevails.
Today, Emily continues to comfort others with the Hope Bear Program. In conjunction with the PCDH19 Alliance, Emily mails plush, stuffed bears named “Hope” to PCDH19 kids living all over the world. Some kids are newly diagnosed, some are years into their battle; all of them smile when they see Hope. Emily loves seeing pictures of her fellow PCDH19 warriors with Hope in their arms. She intends to send out hundreds more.
In contrast to her gentle, loving nature, Emily has another passion: martial arts. Despite seizures and medication side effects, she has worked her way up to a brown belt in karate. Every Tuesday and Thursday evening, you can find Emily at karate class practicing punches, kicks, sparring, self-defense and board breaks. Her favorite activity is breaking boards but she also loves to shock her sparring opponents with stealthy kicks from her surprisingly long legs.
Every seizure-free day is a gift for Emily and she makes the best of each moment. She wants to be a “you-tuber” when she grows up, loves anything Taylor Swift and is always up for an adventure. At 10 years old, she has lived through more than most people will in their entire lives. She is a strong, resilient, determined, confident, gentle, loving and funny young lady who happens to have epilepsy. PCDH19 is a part of her life, but does not define her. Emily is Beauty Revived.
To learn more about PCDH19 epilepsy, visit www.pcdh19info.org.
Short Bio of Photographer
Alexia Leland is a natural light portrait photographer in Billings, MT and specializes in families and high school seniors. She enjoys capturing memories for you, so that one day you will look back and remember those precious times in your life.