Punualii Kawika Kahanu

My Punuali'i was my firstborn, he was born on

Born November 2, 2003. I was tested before he was born to see if I was a carrier due to my family history of Duchenne. I am a carrier and got pregnant so I did the tests (amnio) and found out before he was born that Punuali'i has it.

I was given a choice by my doctor as to what to do. I chose his life after hearing his strong little heart beating. I couldn't choose anything else, I wanted him.

Even though feelings of guilt crept in over the years

Guilt because I wondered if I was selfish for putting my wonderful son through all the challenges we face with Duchenne.

Then you learn to overcome those things and do what needs to be done. Then you find things in life that make them and you happy: find joy, laughter and love, create memories that no one can take away from you.

Memories that no one can take away from you, take lots of photos and videos so that you

you can hear their voices. Punuali'i always made this easy because he was a force of nature who fought against every challenge until his body could no longer catch up with his mind.

He went to school until the 6th grade, then due to bullying and lack of support, he began home schooling.

At this time he also had his spinal fusion, which was a challenge in school. Punuali'i and I decided it was the right decision for his safety. Punuali'i hated school anyway.

The advantage was that I was able to spend more time with him and his brother when the time came for Puliki.