Local father's love & ingenuity helps terminally ill son - Hawaii News Now - KGMB and KHNL

Local father's love & ingenuity helps terminally ill son

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HONOLULU (HawaiiNewsNow) -

A father's unconditional love and ingenuity is making it possible for his son to experience the world in a way he otherwise wouldn't be able to.

Alejandro Ako was diagnosed with Type 1 Spinal Muscular Atrophy when he was just five months old.  The degenerative disease makes it impossible for the now 2 and a half year-old to walk, talk or even breathe on his own, but thanks to his dad, he's now mobile and able to explore as most toddlers do.

"It's actually been very, very interesting to us to watch him and see the sorts of things that he seeks out.  There are a lot of things we just don't realize. We take for granted our ability to move around in our world," explained Alejandro's father, Shea Kanani Ako.

Alejandro's neurological disorder prevents his muscles from receiving motor messages sent by his brain.  His hands and fingers are too weak to control a traditional power wheelchair using a joystick – so his dad, Kanani, came up with an incredible way to help Alejandro get around.

"It's been really great for us to watch him learn to use the wheelchair.  It's been really amazing.  It's kind of like, probably like, watching your child take their first steps.  He's still learning how to use it, but he absolutely loves it and is happy to take every opportunity to get into it and drive around," described Kanani via Skype from Chicago, where the O'ahu native now lives.

Alejandro's wheelchair is completely custom-made.  Using parts from a motorized scooter, a child's car seat and micro-processors – Kanani built pedals that allow his son to press on sensors using his toes, which still have some strength.

"It enables him to do things that are pretty typical for kids his age.  He's able to explore, he's able to play in ways that he hasn't been able to play before.  We play games with him – we play get mommy or get daddy and chase him around and he's able to chase us around.  He's able to get a closer look at things that interest him," said Kanani.

Kanani's invention is allowing Alejandro to experience the world in a way he never has.  It's hard to say, who it's making happier – Alejandro who loves  to motor around in the backyard looking at planes – or his father, whose face lights up even when describing how the wheelchair is letting his son go through the "terrible two's".

"We ran into a little time there where he was actually testing his parents and crashing into the walls in our dining room as two-year-olds do and it's been – it may sound odd, but it's been really exciting for us to have this opportunities to discipline him," explained Kanani with a laugh.

Kanani has no plans to patent any of his inventions – in fact, he's doing the exact opposite by sharing everything he's learned and developed with others.  His father, Julian Ako, calls him inspiring.

"When I praise him and tell him how proud I am of him, he believes that any parent who is faced with a similar challenge would be doing exactly what he's doing.  So Alejandro, in my mind, is blessed because he was born to parents who are loving him and taking care of him despite the challenges that he has," said Julian, who is the high school principal of Kamehameha's Kapalama campus.

Family members say it is likely Alejandro's condition will degenerate further and he will probably lose all ability to move his fingers and toes, but Kanani is preparing himself.  He's already working on a new project, a brain computer interface that will enable Alejandro to pilot a wheelchair and communicate using brain activity.

"Alejandro has really taught us about what's important in life and we really wouldn't change anything about our lives.  We live joyful, happy lives all three of us," said Kanani.

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