Sedona
butterfly
effect
aiming to provide the best outcomes for babies at-risk or diagnosed with cerebral palsy
our mission
In memory of our beloved daughter Sedona, who made incredible motor achievements in her lifetime despite her medical history, our mission is to help underserved families who have children like Sedona that are at-risk or diagnosed with cerebral palsy (i.e. brain injury, HIE, prematurity) achieve their full potential by providing the resources and access to therapies and treatments that we were able to find and provide for our daughter. Many of these therapies and treatments are not covered by insurance or the "right type of insurance" and are cost-prohibitive or not-accessible for those without financial means or who don't live in major metropolitan areas. We intend to make as meaningful an impact on as many babies as possible.
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Press: "She Will Move Mountains" LB Post
"How Do You Cope With the Loss of a Child?" LB Post
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You can read the expanded version on our original GoFundMe here.
Programs
Los Angeles only
APPLICATIONS CURRENTLY CLOSED
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Eligible participants will receive a free in-person demonstration session of cutting-edge therapy exercises with a physical and/or occupational therapy at a therapy clinic in Los Angeles. Therapies may include dynamic movement intervention (DMI) and electrical stimulation (E-STIM), as appropriate. Occupational therapy will be conducted by Dr. Marielly Mitchell of Theraplay LA (theraplayla.com) and physical therapy will be conducted by Jennifer Swan (jennyswanpt.com), both of whom are former therapists from NAPA Center LA. Child 0-3 years old of all milestones are eligible.
We do ask for permission to film the therapy sessions for other families to benefit virtually. The family should be located in/near Los Angeles, and have reliable transportation to participate. To apply for this opportunity, please click on the link on the left.
When Sedona was in the NICU, we scoured the internet for the best early-intervention therapies out there. However, we found that many of the therapies and treatments we wanted for her had years-long waitlists and were not financially accessible to most people. In 9 months alone, we spent some $30,000 out-of-pocket just on non-medical therapies and treatments.
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The following therapy programs are intended to increase access to the cutting-edge therapies and treatments we were able to provide for her.
Virtual. Free.
APPLICATIONS CURRENTLY CLOSED
This 3-month program will give families access to weekly video trainings on dynamic movement intervention (DMI) therapy exercises to improve neck/trunk control and meet developmental milestones. In exchange for access to the program, we ask for a commitment to try the program for at least 3 months and weekly feedback on the videos, so that we can continue to modify and improve the program for future families. If you are interested in this program, please apply to the link on the left.
Roadmap
What to expect when your child is at-risk of cerebral palsy
Forthcoming. Despite being a doctor/lawyer couple, we found immense challenges wading through bureaucracy and getting our child's needs met. We also frankly had no idea on what to expect for a child like our daughter. This roadmap is intended to be a comprehensive guide of what we wish we knew at the beginning of our journey, and is written in collaboration with other families and health professionals.