7-year-old Hawaiian boy battling rare disorder receives ornaments from all 50 states
Waianae, Hawaii — The true spirit of Christmas shines through to a dying Hawaii boy.
Keawe Mederios, 7, has lost the ability to speak and move, but still has the power to brighten the lives of his Waianae family. Keawe used to be a typical Hawaiian kid.
“He was very happy. Always put a smile on our faces, except when he was hard-headed,” laughed mom Chasitie Medeiros.
Keawe’s happy childhood was turned upside-down last year.
“In February of last year he was diagnosed with a rare deadly genetic disorder known as adrenoleukodystrophy or ALD,” said Medeiros.
ALD is not only fatal, but the way it kills is absolutely heartbreaking. As it eats away at the brain’s protective layer, it takes back all the abilities a child has learned – like walking and talking. Then it takes away senses, like Keawe’s sight. Finally, patients are left unable to move, in a vegetative state.
“As he started to regress, that’s when we started coming together. And we offered up any help we can give,” said Keawe’s grandmother Denise Medeiros-Rezentes.
Now Keawe’s family takes care of him round the clock. They make sure he is feed, gets his long list of medicines and is not in any pain. Just as important, they shower him with love. Over the past year and a half, they helped Keawe complete items on his bucket list, and even talked about his death.
“I think he did realize that eventually he was going to go. He used to blurt out the most random things, he told me he was ready to go home to Jesus,” said Medeiros.
This Christmas season, family surrounded Keawe with holiday lights and decorations, including ornaments from all 50 states. There are 165 of them.
They are gifts from many people who don’t even know Keawe. They learned about him on social media, and wanted to make this Christmas special.
“We don’t know if it is our last Christmas with him. If it is, then we know there was love all around the world,” said Medeiros.
Along with love, there is also laughter. Especially at Keawe’s bedside. Even though the seven year old can’t talk or move, he still makes those around him smile. Which shows his family one of the best Christmas presents isn’t always under the tree.
The Medeiros family set up a GoFundMe page to help with medical expenses. They have also been assisted by Hospice Hawaii. Caregivers not only come in every week to give family members a break, but they also help with end of life discussions. There will be more help, even after Keawe is gone.
“For this child and for all the families we care for, we offer grief and bereavement services for a year after the death of a loved one. It’s a part of what we do,” said Hospice Hawaii President Kenneth Zeri.