Warwick PD grant wish for ailing teen
Warwick resident Olivia Hauke turned 16 years old on Monday, but not even the best doctors can say for sure whether or not she’ll be here to celebrate any more birthdays.
Inside Olivia’s DNA is a genetic mutation so rare that only four other children in the entire world have ever been diagnosed with the condition which results from it. The disease is called deformed epidermal autoregulatory factor 1 (DEAF1), and it results in speech issues, lessened motor function abilities and general cognitive degeneration which manifests primarily through loss of memory and a lack of understanding.
In Hauke’s case, her degeneration will eventually claim her life. The most generous of medical estimates doubt that she’ll make it to 20, and that she’ll lose the ability to recognize even family members by 18. So in the time that they have left together, Olivia’s mother Patricia Arakelian is trying to cross off items on her bucket list.
“She knows she's not well and that she's declining,” Arakelian said. “Her bucket list is pretty funny. She said to me that there better be Dunkin Donuts in heaven.”
Olivia has loved shows about cops and crime since she was little, so when community services officer Daniel Maggiacomo of the Warwick Police Department heard of Olivia’s situation, and her mother’s desire to have Olivia come into the station for a tour of the facility, he didn’t hesitate.
“Anything we could do to help her out, we were happy to do,” he said.
Maggiacomo, joined by several other officers including K-9 officer Viking and his human compatriot Aaron Steere, led Olivia and her family around for a behind the scenes tour of the station. She got fingerprinted, got a chance to stand inside a holding cell (the cells were ensured to be empty beforehand) and met with police staff in dispatch. Maggiacomo got excited and went to show Olivia the armory, but she thought otherwise.
“I’m all set,” she said with a grin after a quick look at the huge array of weaponry from behind the glass.
Maggiacomo gave Olivia a playing card that displayed Viking, and a police coin. They took a group photo together with Viking and the officers and then Olivia was allowed to sit on a police motorcycle with the lights flashing. She had gotten into the backseat of a police cruiser and heard its siren – at her request – earlier.
“They did an amazing job,” said Arakelian the next day, mentioning that Olivia couldn’t wait to show off her Viking card to her peers at Pilgrim High School.
Olivia was like any other normal child, and Arakelian only first started noticing issues when she went from third to fourth grade. She started forgetting where she had put things that she just placed down. It took five years of analysis from some of the best doctors at Boston Children’s Hospital in Boston before they had the diagnosis.
“I basically had a breakdown [when learning of the diagnosis],” she said. “I crushed my big toe kicking a bucket. I asked, ‘How could this be true?’”
Although Olivia was Arakelian’s fourth and youngest child – one that she didn’t think she could even physically have when she became pregnant – she has since come to understand that Olivia’s life, although it will be tragically short, was something of destiny, and meant to serve a greater purpose.
“The more I thought about it, she was given to me as a gift,” she said. “It just dawned on me one night that she was given to me for me to learn. She’s my teacher in life. On how to calm down and sit back and be grateful for life and everything in it and everyone in it. She's made me appreciate life more. She's made me a better person.”
Arakelian said that her experience with the rare disease, which is passed along genetically through a rare combination of factors in both parents, has made her want to become an advocate for other kids who may be suffering from the disease but have not been diagnosed since it is still such an unknown ailment.
Olivia hopes to go to the Boston Aquarium, New York City and see Taylor Swift. The bucket list doesn’t have a structure, it only serves as a guide to the remaining months of an undeniably brave and ebullient teenager’s life.
“One day I'm going to have to give her back to God. I have to accept that,” Arakelian said. “I have to accept that someday me and her will be together again. I always tell her I'll always be 'here' and I point to me heart.”