Kiya

Written by Ashley Wells

Kiya is turning 5 years old this month! Kiya lives with a rare form of epilepsy called SCN8A, Cerebral Palsy, Osteocondromas (Bone spurs), and speech delays. Kiya is also on a g-tube. Kiya has had around 10 surgeries already for bone spurs. She requires an extensive team during surgery for seizures, breathing problems, and more. She may need to have 2 ribs removed and replaced with prosthetic, and if that happens, she will have to have it redone every 5 to 6 months as she grows. SCN8A is a rare form of epilepsy characterized by recurrent seizures, abnormal brain function, and intellectual disability. Most people with this type of epilepsy have more than 1 type of seizure. Symptoms include seizures, learning difficulties, muscle spasms, low or high muscle tone, poor coordination, developmental delay, and features similar to autism. (For more information on SCN8A, click here.)

Kiya is a very caring, loving, and happy girl. Even though she has to spend a lot of time in the hospital, her mother says she still waves and says hi to everyone. She is very smart and picks up on things quickly. She has a lot of patience, is very empathetic, and has a very high pain tolerance. Kiya is such a trooper, even though she has had to go through so many surgeries already in her young life, the doctor’s are always amazed at how fast she bounces back. Kiya loves her family, but most of all her 90 year old great grandfather who is her best buddy. 

Kiya is the middle child, she has an older sister, Mika, and a younger sister, Nena. Mika, who turns 7 this month, sometimes has a hard time coping with some of the harder aspects of her sister’s disabilities, like witnessing her sister’s seizures. She is very protective of her little sister and loves to play with her, but she also knows that she needs to be careful. Nena is 2 years old, and so far hasn’t really shown much understanding of her sister’s disabilities. Her mother describes her as a little spitfire. Both Mika and Nena have a hard time when their mom has to be away from them at the hospital with Kiya. 

When asked what Kiya would like to be when she grows up, her mom, Selene, says she wouldn’t be surprised if she had a career in the medical field because of her high level of empathy and the fact that she plays with Doc McStuffins toys. 

Selene’s hope for Kiya’s future is “to be seizure free, to find a cure for SCN8A, to experience a typical life not filled with surgeries and hospitals. To have the best life. Happiness and health.” 

Kiya has a Facebook page titled “Kiya fight against SCN8A Epilepsy and Ataxic Cerebral Palsy.”