CDKL5 Deficiency Disorder
“Our beautiful princess was born with CDKL5 Deficiency Disorder. She has taught us and the world of CDKL5 research so much! Kiera has severely intractable epilepsy. She has seizures every single day, and struggles with communication, not because she has nothing to say but because she has apraxia. Her muscles won’t let her form words and sentences easily, but in her brain, she knows exactly what she wants to say.
If you look closely, you’ll see a strong, spirited, and bright young lady who is locked inside a fragile and broken body!
Just because a person can’t talk doesn’t mean they can’t think, feel, understand, want, need, wish, or hope. Our daughter is alive inside! She is a vibrant and intelligent young lady who has a wonderful sense of humor, love for music, dancing, and the moon and stars. She has more determination than most of the people we know, as well as a heart full of love. She has taught us to never underestimate a child, or the brain’s capacity to re-wire and adapt to the circumstances.”