Help Yojiro Thrive with Specialized Care

Aloha mai kākou. My name is Jericho. My husband, Kahiau, and I are from Kauaʻi, HI. We have four kids. Yojiro Kauakupuna Rogers is our youngest son who we welcomed into our lives on January 27, 2023. When Yojiro was born we noticed something seemed different from anything we experienced with our other children. Yojiro would have what we were told could be “breath holding spells” that he would most likely outgrow. There were other concerns that stood out to us such as difficulty eating, lack of communicative cues, and other developmental delays. Around eight weeks old Yojiro was sent to the hospital after his pediatrician suspected he was having seizures.

Over the next 8 months Yojiro experienced numerous blood tests, scans, genetic testing, and hospitalizations, and was diagnosed with a rare genetic disorder related to KCNQ2-DEE (Developmental and Epileptic Encephalopathy). His specific variant is “de novo”, meaning it was a random genetic mutation that occurred with him and was not passed down from me or my husband. It is an extremely complicated condition and those who live with it often fall on a broad spectrum of how the disorder presents and how severe those presentations affect their bodies vary greatly, (similar to the spectrum of autism). To learn more about this condition please visit: https://www.kcnq2cure.org/ . If anyone would like to donate directly to the KCNQ2 Alliance nonprofit, you can donate at this page I’ve created where donations go to the nonprofit which supports vital research and future treatments, as well as supports other families: https://secure.givelively.org/donate/kcnq2-cure-alliance-inc/jericho-rogers

I posted a somewhat detailed story of the journey to getting his diagnosis here: https://thebrokenisthebeautiful.home.blog/author/jerichokauai/? . Yojiro presents with seizures that are difficult to control. The prognosis for his condition is extremely under researched and hard to predict. However, he falls on the more severe side of the spectrum when it comes to limitations. He is non verbal, immobile, and has global developmental delays. This does not mean he will never meet “typical” milestones, it does mean that any milestones he meets will be on his own timeline. He sees multiple specialists that include a pediatric neurologist, orthopedic doctor, gastrointestinal specialist, optometrist, physical therapist, speech therapist, and he sees his pediatrician regularly. The list of specialists grows as we strive to learn as much as we can about his condition. We are continually looking for as many supportive therapies and treatments that will manage his condition in the best ways and give him the most opportunities as possible. We meet with all of these specialists on a regular basis to discuss adjustments in current treatments and possible future changes that would benefit Yojiro.

Right now, his treatments include routines of daily anti seizure medications, physical and speech therapy, as well as other routine management of his healthcare plan with his medical team.

With that said, we have pushed to get him into intensive therapy programs as much as possible. Most recently we have registered him for a three week intensive session at a therapy center called NAPA Center(Neurological and Physical Abilitation Center) . We will be traveling to Austin, TX for this intensive in August of 2025. It has been a long process to get him into something like this, as resources here in Hawai’i are extremely limited. Therapies such as DMI(dynamic movement interventions), and others that are offered at centers like NAPA, are very beneficial for kids with conditions like Yojiro has.

Our fundraising journey will most likely be ongoing as Yojiro’s condition is a life long condition. Where funds are directed will change over time as well, depending on what our area of focus will be for Yojiro’s care. At some point, funds may go towards medical equipment that he will requires such as a wheel chair or seating devices that are not covered by insurance. Right now, funds raised will be going towards the three week intensive therapy at the NAPA Center in August 2025.

So many people in our lives have reached out wanting to help in any capacity. So far, this has been a very isolating experience for me and my husband as parents. More than isolating, we have been extremely humbled throughout our lives and have experienced challenges beyond anything we could have imagined since having Yojiro. We also realize that for many, giving donations might be the only way some people can offer support for us during our journey with caring for Yojiro and navigating his medical complexities. We appreciate all donations and have been blessed with the opportunity and responsibility of caring for Yojiro and have so much hope for his future.

Me ka haʻahaʻa,

Jericho & Kahiau