Meet Kepler.
CHARGE Syndrome
Grace: (n): kindness which benefits or serves another Kepler Otero exemplifies grace. At just six years old, his bright smile and bubbling laugh, are memorable to all who meet him. According to his first grade teacher Mrs. Blankenship, at Hardin Elementary School school in Hollister, “Kepler is kind. He is very attentive and quick to make sure that everyone is ok. Despite the fact that we are learning remotely, Kepler makes it a point to greet his friends and his teachers. He wants to make others happy and will do what he can to get a smile on your face.”
His joy filled approach to life is perhaps even more amazing since his six years have been filled with greater challenges than most will experience in a lifetime. Born with CHARGE Syndrome, a rare genetic condition that affects his hearing, vision, balance, coordination and ability to eat and breathe safely, Kepler underwent multiple surgeries in the first fragile years of his life. Today, though he relies on a tracheostomy to breathe and g-tube for nutrition, these are minor obstacles in his quest to learn and have fun.
Keppler’s Coastal Kids shift nurse, Marta Escobar, LVN, is there to pave the way for this bright and talented young boy, “He is a very verbal little kid, and there are a thousand funny stories about him,” laughs Marta. “He knows how to communicate what he wants and what he needs and every single day is a different adventure with him.” Marta is with him 40 hours each week, providing the skilled medical care he needs to boldly live his life. Soon, Marta and Kepler will be off on a new adventure together - returning to inperson elementary school.
Kepler’s parents are grateful that Marta will be able to join him when he goes back to the classroom. “Kepler loves Marta. It is so nice to know that they have that special bond because when something is wrong, he has to feel comfortable letting her know. We love having her there for him.” For both Margarita and Manuel having a trusted caregiver brings incredible peace of mind. Manuel also wanted to share a message for other special needs parents, “I am more than happy to share our story, I know what it is like to have a child with a condition that isn’t commonly heard of. If there is a family out there going through something like this for the first time, I hope they see this story and know that they are not alone.” It is clear that grace runs in the family.
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"I am more than happy to share our story, I know what it is like to have a child with a condition that isn’t commonly heard of. If there is a family out there going through something like this for the first time, I hope they see this story and know that they are not alone.” --Kepler's Dad