Today we’d like to introduce you to Amy Wan.
Hi Amy, we’re thrilled to have a chance to learn your story today. So, before we get into specifics, maybe you can briefly walk us through how you got to where you are today.
I (Amy Wan) am a lawyer and entrepreneur, and my husband, Jonar de Guzman, is a physician and health coach. We created Sedona Butterfly Effect, a 501(c)3 non-profit, in memory of our daughter Sedona de Guzman.
Sedona was born 3 months early on Aug 5, 2021 and suffered an intraventricular hemorrhage (or brain bleed) at birth. Before coming home, she spent nearly 6 months in the NICU, underwent 4 brain surgeries and 1 g-tube surgery, and was diagnosed with spastic hemiplegic cerebral palsy early on.
We were never sure whether Sedona would walk, talk, or what quality of life she’d have. But we did intense research on neuroplasticity (or the ability of the brain to change after injury) and found her the best therapists, therapists, and caretakers. Sedona did amazingly–she started moving her left arm and learned to roll and sit independently. Her neurologist from the NICU saw her a year later and remarked that her achievements were an absolute miracle.
And then, suddenly, on January 23, 2023, at 17 months old, Sedona left us.
Before she passed, my husband and I had talked about starting an organization to help other children like Sedona. We saw how effective her progress was with the right resources, and between his medical knowledge and my advocacy skills, felt like we could help other families. However, this was more of a thought–something we thought we’d do when Sedona had graduated high school or when we retired.
When Sedona passed suddenly, we immediately began receiving flowers–and my husband is very allergic to flowers. We thought about redirecting their sympathies towards some sort of donation instead, and it occurred to us that we might as well start that organization we had dreamt of now. So, some 24 hours after her passing, we put up a GoFundMe where people could make contributions and were floored when the donations started rolling in.
We have now given out nearly 20 grants to families with babies at-risk or diagnosed with cerebral palsy for cutting-edge therapy. And most recently, we piloted a program in which we coached a local family in Long Beach on how to effectively crowdfund their own campaign to help with the costs of caring for their special needs child. We were able to match a portion of the donations and open the doors for them to receive employer-matching donations and tax-deductible donations for their donors. That family raised over $80,000–which sounds like a lot but is a drop in the bucket when it comes to caring for a special needs child. (We spent over 90K in 9 months alone just on therapies and nursing care for Sedona, exclusive of medical bills). We are working on more services in the future.
Sedona has been our greatest blessing and inspiration. She helped us stop and re-evaluate our lives. I was the CEO of a tech company but have since left after realizing that my heart and purpose were no longer there. My husband left his hospital job to pursue health coaching, which is where his heart truly lies. Sedona’s nurse (who incidentally was the charge nurse that delivered her, her home care nurse when she was home, and was there when she passed) went through an immense grief journey and has now changed career paths to train to be a pediatric death doula. And Sedona’s cousin Alex Knopf, who is in high school, processed her grief by creating a documentary short about Sedona’s life and her impact. It has since won numerous awards at various film festivals. (You can view it here: https://vimeo.com/
Here is a story from the local paper outlining our story soon after it happened: https://lbpost.com/
Alright, so let’s dig a little deeper into the story – has it been an easy path overall, and if not, what were the challenges you’ve had to overcome?
Nope. I come from tech and began with a “move fast and break things” attitude, so we initially started out with a free virtual therapy program. But, as we quickly learned, even if two babies with cerebral palsy are working on the same milestone, they have different issues and different needs. There were also legal and liability issues that came up. Also, these babies are medically complex and sometimes fragile, and it became difficult to do group therapy when a number of them were going in and out of the hospital at any one time. We actually lost a baby a couple weeks into the first cohort. After trying to get that program up and running, we apologized to the first cohort of families and ended up giving them a grant for a certain number of therapy sessions, which they could do in-person with a local practitioner or virtually, which they were pleased about.
However, from that first set of grants to enable greater access to cutting-edge therapies, we have already heard incredible stories. One caretaker wrote in “This has already been life changing for our foster child! I had told you before how badly I wanted him to be able to sit, and within 3 days of DMI therapy (only 1 hour per day), he was able to sit!!!”
“I have been discouraged that [child] was “almost sitting” for over a year but never actually would and wasn’t making progress. Regular PT had not been helpful at all. In just a few short days/hours, [the therapist] has worked magic for our boy! He can now sit independently and is working on the transitions to be independent in getting into a sitting position. He also is almost now able to get from standing to back on the ground independently as well. He is now able to quickly and fluidly climb up our stairs. He is becoming more regulated with some vagus nerve stimulation that [the therapist] has been doing, which helps remove the fear aspect he gets locked in. He is also all of a sudden showing progress in feeding therapy for the first time in a while and even taking sips of water, multiple sips in a row, from a straw sippy cup!!! This is huge for him! It’s like this has opened up channels in his brain, and now we are just putting pieces together. [The therapist] feels he is “able” to do anything; it is just disorganized, so we need to show him there is another way.”
We’ve now pivoted the grant program towards coaching families to set up their own crowdfunding campaign, where we match a certain amount of donations and use our non-profit status to help them raise more funds. This has created a more sustainable grant-making program for us, as we’ve exhausted donations from our personal and professional networks.
We’ve been impressed with Sedona Butterfly Effect, but for folks who might not be as familiar, what can you share with them about what you do and what sets you apart from others?
Sedona Butterfly Effect is a 501(c)3 charity that focuses on providing resources to families of babies who are at-risk or diagnosed with cerebral palsy, which is a group of conditions that affect movement and posture, usually caused by damage that occurs to the developing brain, oftentimes before or during birth. This may be from prematurity, brain injury, a brain bleed, or otherwise.
Our specific focus is on the early years when families are first learning and coping with caring for their special needs infant. We focus on helping families gain awareness about the importance of early intervention and neuroplasticity (the ability of the brain to change its structure, function, and organization) and providing families resources, including coaching and grants, for cutting-edge therapies.
We’d like families to know that we, too, have struggled physically, emotionally, and financially with caring and advocating for our own daughter and would like to offer our assistance with supporting them.
Can you talk to us about how you think about risk?
I’ve personally always been a risk-taker. I couldn’t see myself in a traditional legal career, and so have had experienced a non-traditional career path in which I’ve started my law firms (which automated a portion of what I did as an attorney), a crypto mobile gaming startup, and am now taking time for myself (which I think surprises others, myself included). Since Sedona passed, my husband, I, and Sedona’s former nurse have thrown caution to the wind and have had more clarity and courage to take entirely different career paths.
Contact Info:
- Website: sedonabutterflyeffect
.com - Instagram: sedonabutterflyeffe
ct - Facebook: https://www.
facebook.com/ sedonabutterflyeffect - Other: https://vimeo.com/
837249974
