FROM SURVIVOR TO SUPERHERO: MEET KEHLANI
“Kehlani is an angel! Her presence makes you smile and shows you a “true warrior” in real life,” Kehlani’s father Kierre proudly boasts when describing his daughter’s warm demeanor and strength. Kehlani was diagnosed with Type 1 Lissencephaly, specifically Miller-Dieker Syndrome, when her mother, Kristin, was 31 weeks pregnant.
Lissencephaly also known as “smooth brain,” is a rare brain malfunction in which the brain does not develop properly with the folds and ridges of a typical brain. This condition only affects 1 in 100,000 pregnancies. Children with smooth brains often experience seizures, are unable to walk, talk, or eat on their own, and have shortened lifespans.
Kehlani was not expected to live past birth. Kristin was devastated when she learned of Kehlani’s diagnosis. “We had just had a beautiful baby shower days before, and I was so excited to become a mom, but never did I imagine having a child with special needs,” Kristin said. But with support from her mom, Kehlani’s father, and trust in God, she has remained strong and dedicated to giving Kehlani the best life possible.
Today, Kehlani is a 21-month-old warrior who has already beat the odds against her. Her father, Kierre, describes her as “God’s chosen one.” “Kehlani’s diagnosis isn’t a disability, it’s a superpower! Her ability to overcome the odds and thrive to be the beautiful young lady that she is has been amazing to experience,” said Kierre.
Kehlani has challenges as she is non-verbal and cannot sit or eat without assistance. She has a feeding g-tube surgically installed and sees a neurologist, gastroenterologist, and pediatrician every 3-6 months. However, those challenges don’t stop her ability to smile and warm up a room.
To address Kehlani’s challenges, she was enrolled at The Elaine Clark Center in August 2022. “I was looking for a place that was going to help Kehlani continue to thrive and make progress. I was also looking for small class sizes so she would get the individualized attention that she
needs each day,” said Kristin.
The Elaine Clark Center has provided support in the form of therapeutic services, specialized care, and assistance with applying for medical aid. “They introduced us to the scholarship program, which has been such a blessing. They also provided us with all the necessary resources to apply for Katie Beckett Medicaid,” said Kristin.
Kehlani’s family has had a weight lifted off their shoulders since Kehlani started attending the Center. Kehlani’s grandmother, Angela, has been a very present support system for Kehlani and her parents. Angela describes her feelings toward the Center as “pure joy.”
“With Kehlani’s condition, I was initially concerned that people would not know how to care for her or if she would get needed special attention. All concerns were quickly dispelled as the care for Kehlani, and her progress has been more than we could have hoped for. It helps Kehlani to be around other kids and caring adults and it lends to less anxiety as we work during the day,” said Angela.
Kehlani’s care at The Elaine Clark Center would not be possible without a scholarship. “A scholarship to my family means so much. It allows us to use those extra funds that we would have to use for enrollment towards Kehlani’s specialized formula, medications, doctors’ visits,and accessibility equipment that she needs,” said Kristin.
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