Our daughter, Riley Nicole Duarte, was born on January 30, 2022. After years of struggling to get pregnant, we turned to IVF and were overjoyed to finally be able to bring our baby girl home. Our first 3 months were blissfully ordinary.
Riley had her first episode of AHC on Mother’s Day, when she was 3 ½ months old. I was putting her to sleep and noticed that her little body was extremely stiff, her eyes seemed to be “stuck” gazing upwards, and she was unresponsive to my voice. Immediately, her dad and I called 911 and our journey with AHC began – though we didn’t know it was AHC at the me.
At the hospital, they didn’t know what was “wrong” with her. After a normal EEG, MRI, and labs, we were told that “babies are weird sometimes!” and we were able to come back home.
2 weeks later, she had another episode and again, we were rushed to the ER via ambulance. This me, she was “diagnosed” with epilepsy, and we were able to get a follow-up appointment scheduled with a pediatric neurologist. Our pediatric neurologist told us it didn’t look like epilepsy, but she didn’t know what it was. Over the next several months, we did an epilepsy panel and met with genetics. We pushed for further genetic testing and received our results on November 18, 2022. Our beautiful baby girl, Riley, had Alternating Hemiplegia of Childhood (AHC). To say we were devastated is an understatement. Our hearts were completely shattered. We didn’t know what to expect for both the short term and the long term future and were dismayed at the lack of knowledge in the medical community. Luckily, we were connected with AHCF almost immediately, and found a knowledgeable, friendly, and reassuring community of parents and AHC parents.
Since then, we’ve come a long way. We always say that Riley’s on her own timeline – she started walking independently at age 2.5, and at 3.5, she is putting words together to form sentences. We are able to communicate with her, which was a huge concern of ours early on. She is fully in her “three-nager” phase and has big opinions already.
She is constantly defying the odds. She loves attending music class, going to the park (especially with her baby dolls), and visiting her grandparents. Her episodes are unpredictable but, nearly 3 years after her diagnosis, we are able to handle them better than we were at the beginning. They are still terrifying, we still don’t sleep well during episodes, and we still cry during every single one, but we know we will get through it and she will come back to us. We like to remind ourselves that there are far more good days than bad. Our family motto is “Make the good days great, and the bad days good”.
Riley is far more than just a little girl with an extremely rare neurological disease. AHC is truly the least interesting thing about her – she is smart, she is determined, she is brave, she is strong, she is silly, and she is beautiful, inside and out. Life looks a lot different than we imagined, but it’s still an extraordinarily beautiful life that we are truly lucky to share with her.
