Sedona Butterfly Effect (SBE) was connected with the Russell family in June 2023, after baby Russell had been delivered via emergency c-section 2 months early after a routine ultrasound scan showed multiple intraventricular hemorrhages (brain bleeds) causing chronic hydrocephaly.
At the time, the Russell family was told their only hope was to be able to meet him before he passed, but after 3 months in the NICU and multiple brain surgeries, he was able to finally come home.
Baby Russell was diagnosed early-on with cerebral palsy and, just as Sedona
’s parents quickly realized, there were many needs that weren’t covered by insurance or state programs. Baby Russell’s mother found herself spending several hours a day negotiating with insurance and looking for ways to get as much coverage as possible. Even with her fierce advocacy, they were paying thousands of dollars a month on out-of-pocket expenses to give Gus the best care he deserved, including paying for recurring intensive physical therapy programs, and obtaining equipment specific to her child’s mobility issues. Baby Russell’s mother also found herself in a predicament, as she had to return to work, but couldn’t budget for a 1-on-1 nanny trained in and with experience working with children with similar needs, as recommended by their pediatric neurologist, due to Baby’s Russell’s risk factors and near daily appointments.
SBE helped the Russell family plan and execute a GoFundMe campaign to pay for Baby Russell’s various medical, therapeutic, and caregiving expenses. The Russell family was able to raise over $85,000 from their network of friends, family, and community. SBE also matched dollar-for-dollar the first $3,000 in donations, provided an avenue for corporate matching donations, and enabled donors to their campaign to receive tax deductions for their donations.
Says Baby Russell’s mother, “Before connecting with SBE, we felt constantly lost and overwhelmed. They helped us navigate our new lives and elevated our GoFundMe past anything we ever dreamed it could be. We can now provide our child with therapies and equipment that used to be out of reach, and we see progress everyday. SBE changed our lives”
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.
Comments