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2016 Speak Now For Kids Family Advocacy Day Hero: Lakota

rsz_st_josephs_childrens_hospital_lockhart_lakota_photo.jpgAt birth, Lakota was admitted to the neonatal intensive care unit (NICU) at St. Joseph’s Children’s Hospital of Tampa. He was diagnosed with an extremely rare condition known as congenital central hypoventilation syndrome, a central nervous system disorder which causes Lakota’s breathing to stop when he falls asleep. Lakota’s doctors performed two major surgeries and numerous diagnostic tests during his 68-day stay in the NICU, which required inserting breathing and feeding tubes. Then, Lakota’s care was transitioned to St. Joseph’s Chronic-Complex Clinic where he receives care from a team of multiple pediatric specialists. This clinic functions like a medical home, providing access to numerous providers as well as expertly coordinating Lakota’s care.

Lakota has also been diagnosed with autism and suffers from some developmental delays. However, he has surpassed many of his neonatologists’ expectations. Lakota has made significant strides as he has endured many surgeries over the past six years.

Now 7-years-old, Lakota is stable. He loves swinging and climbing from trees in his Batman cape. Lakota dreams of one day meeting Batman and Scooby Doo.


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