Kailua Family Asks for Donation for Son's Head Surgery - Hawaii News Now - KGMB and KHNL

Kailua Family Asks for Donation for Son's Head Surgery

Moana Kay Moana Kay

By Roger Mari

KAILUA (KHNL) -- A Kailua family is asking for your help to raise $50,000 to pay for their infant son's surgery.

Little Axl James Deacon has what is called crainiosynostosis . It happens to only one in every 2000 child births. It causes an abnormal skull shape. It happens inside the womb from the baby sitting on his head for most of the pregnancy.

"Only the front of his head and the back of his head are being able to grow right now, he has to have surgery to remove this strip of bone right here," said Moana Kay, Axl's mother.

For now, Alex functions as a normal 17-month-old and even helps around his grandfather's motorcycle shop. But there could be long term effects if the surgery is not done.

"He can develop later on in life migraines seizure, possible learning disabilities, these are things that can happen but won't necessarily happen."

His family has decided to have the surgery done by a specialist in Texas. Their insurance will not cover the cost if it's not done in Hawaii. Alex's grandfather is giving away a motorcycle during a raffle at a fundraiser this Sunday.

Hopefully we'll be able to pull this off to make it successful for the little guy," said Mark Deacon, Axl's grandfather.

Donations will go toward helping little Alex Deacon live a normal life.

"We don't want him to be teased in school for his mis-shapen head," said Moana Kay.

This Sunday's fundraiser will be held at Custom Cycles in Kailua between 11 a.m. and 6 p.m.

The address is 201 Kapaa Quarry Road.

In addition to the bike giveaway, there will be six bands and a 4-wheel-drive rock climbing exhibition.

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