Therapy for Kawai

Greetings all,

I am posting this fundraiser on behalf of my sister Ali and nephew Cairo (Kawai).  Many of you have followed their journey since birth and know the amount of research, care and passion Ali puts into providing Cairo the resources and therapies for him to have highest quality of life.  Unfortunately much of the therapy and resources are not covered by insurance and therefore requires a grant (when they are available) or them to cover the costs out of pocket.  They are about to embark on a journey through the end of the year, that enables Cairo to receive therapies that he has been waitlisted for and are finally available, but do have a larger overall cost. 

They will not only have the expenses for the treatment, but also need to find Airbnb’s along the way.   We are asking for support any way you are able;  spiritually, financial or moral support.  We plan to provide updates over the next few months, and I would recommend you follow the Instagram  https://www.instagram.com/adventuresofkawai to learn about their journey, encourage them or just to say hello.

Below is an overview from Ali on the past year and what they have ahead of them in the coming months.

As always thanks for your support and love.
~Amber 


The past 1 ½ years has been challenging for everyone. For Kawai, quarantine has presented several challenges. Mainly, he has not been able to access in person therapy. Keeping Kawai safe has been the biggest focus for our family. We have now hit a time where we have to start accessing in person therapy and cannot continue to keep him quarantined. For a child with Cerebral Palsy therapy is a crucial part of development and quality of life.

At 6 years old he will attend his first 3 week intensive therapy session at world renowned Napa Center in California. Napa Center fills up a year in advance because of their unique and effective therapy model.  They specialize in therapies for kiddos with Cerebral Palsy. Kawai wants to move, but needs help to coordinate the messages from his brain that tells his body to move while relaxing certain muscles at the same time.

Kawai will also get to work with VitalStim which will help him coordinate swallowing so he can eat food by mouth again and decrease the amount of air he swallows. Kawai’s gas has controlled his life for the last 6 years. His gas is so painful it is a trigger for his seizures. Our hope is that with VitalStim he will learn the proper swallowing pattern thus improving overall quality of life.

For those not familiar with intensive therapy, it is a highly specialized, high frequency program based on strengthening and conditioning, decreasing unwanted reflexes & teaching new and improved motor patterns through repetition and correct alignment.   Kawai will be doing 3 hours a day for 3 weeks. It costs between $100-$200/hr. 3 hours/day for 3 weeks ranges from $6000-$9000, not including travel and lodging for the 3 week stay. Lodging alone in the area is between $3000-$5000 for a month.

He will also be traveling to Arizona for stem cell therapy. This will be the first time Kawai is getting stem cells. Stem cell therapy costs $6500. We have seen so many families make many gains from this treatment. It is not a one time “fix all.” This is something that we will continue to do with Kawai and hopefully see new gains with each treatment.  He will follow his stem cell treatment with a week of intensive therapy called Movement Lessons. Two sessions a day for a week at $1000. Thankfully lodging in Arizona is a bit cheaper, but still between $2000-$3000 for a month.

The goal of doing all these therapies now is to get him in proper alignment to build a strong foundation so hopefully later in life he won’t need any more surgeries. We also want him to have the best quality of life he can have. We will always meet him where he is at and want to provide him with any opportunity.

We have invested tens of thousands of dollars towards therapy for Kawai. These therapies are the best for him and unfortunately, insurance does not cover these types of therapies and we are paying out of pocket for these specific therapies. Even for his telehealth therapies (Mom and Dad are doing the hands-on work) during COVID we are paying out of pocket, because these therapists are the best, but not covered by insurance. Even though Kawai has dual coverage insurance we have to pick and choose which therapy he gets because what is effective is not covered.

We are humbly asking for support to help Kawai access the therapy and treatment he needs. We are grateful for everyone who has supported us thus far and who continue to support us with not just donations, but prayers for our little warrior. Please keep Kawaikahe in your prayers this Summer! Mahalo Nui Loa!

Ali