Sedona Butterfly Effect (SBE) re-connected with the Cortez-Ramirez family in August 2024, at the Miller Children’s Hospital’s Annual NICU reunion. Baby Cortez-Ramirez and Sedona had actually been hospitalized in the same NICU room for overlapping periods in late 2021.
Baby Cortez-Ramirez was born in July 2021 via emergency c-section due to a placental abruption. He was diagnosed with hypoxic-ischemic encephalopathy (HIE), spastic quadriplegic cerebral palsy, and Lennox-Gastaut Syndrome (LGS), which is a rare form of epilepsy, and a rare genetic mutation known as DHDDS.
These conditions make Baby Cortez-Ramirez’s daily life challenging, as he suffers from daily seizures. The seizures started as 200+ a day, and has been managed to occur less than 20 times a day now. His seizures, which began as infantile spasms and have evolved into tonic-clonic seizures and LGS, have made his early years a continuous battle for stability and comfort.
Baby Cortez-Ramirez’s family have struggled with the cost of his care. Between medical expenses, therapy sessions, specialized equipment, and daily living needs, his mother is unable to work and must stay home in order to provide him with care.
SBE helped the Cortez-Ramirez family plan and execute a GoFundMe campaign to pay for various therapies and specialized equipment. The Cortez-Ramirez family was able to raise nearly $5,000 from their network of friends, family, and community. SBE also matched dollar-for-dollar the first $3,000 in donations and enabled donors to their campaign to receive tax deductions for their donations.
SBE’s mission is to help families who have babies 0-3 years old that are at-risk or diagnosed with cerebral palsy (i.e. brain injury, HIE, prematurity) achieve their full potential by providing the resources, support, and greater access to early intervention therapies and treatments.
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