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Saying goodbye to Denika

Family in mourning for 12-year-old who battled rare disease 


Published on July 11, 2017

Family photo of Denika Bailey, her brother Tyrell Bailey and their parents Trina Moss and Joey Bailey.

©Contributed photo

Denika Bailey loved princesses, plants, Peppa Pig and the colours pink and purple.

The child’s colourful artwork is prominently displayed on the walls of the family’s home in St. John’s. 

There’s a large aquarium in the corner of the living room where two giant goldfish, an algae eater, a guppy and three tiny frogs swim among the tank’s colourful decor.

“Denika loved her fish... and we’ll always be surrounded by her things... something to hold on to,” the child’s mother, Trina Moss, said.

Denika died on June 14. She was 12 years old.

Denika suffered from a rare autoimmune disease called ROHHAD-NET Syndrome.

The disease – which causes rapid obesity — affects the autonomic nervous and the endocrine system. NET refers to the added formation of neural tumours.

Trina is from Princeton. Denika’s father, Joey Bailey, is from Port Rexton. 

The couple’s son Tyrell is nine years old. The family uprooted from their home in Port Rexton in 2009 to be closer to the Janeway.

Because of Denika’s illness, the hospital has been Trina and Joey’s home for the last two years. Other hospital stays prior to that time often lasted months.

Settling back into their home in St. John’s hasn’t been easy, Trina said.

She sleeps with Denika’s pillow to feel closer to her daughter.

“I’m doing things to make this home mine again. But for two years somebody else was taking care of this for me... I don’t have a routine anymore. My routine was Denika and the hospital... I miss her so much,” Trina said.

Trina is also adjusting to life outside the hospital with Tyrell. 

“Denika got sick when I was pregnant on (Tyrell). So all he’s ever known is the hospital or me being gone,” she said.

Joey had to leave his job to care for Tyrell and to spend as much time as possible with Denika and Trina at the Janeway.

“Joey’s aunt Princeline Murphy (of Port Rexton) kept my house together here and looked after Tyrell. I don’t know what I would have done without her,” Trina said.

Denika is well known to doctors at the Janeway.

“For the last couple of months we knew in our head that she wasn’t getting better. We could see her getting worse.”

Her daughter’s health deteriorated quickly over the last two weeks of her life, Trina said.

Denika was a brave girl, Trina said, even though she knew she was very sick.

“She knew everything medically that was going on with her. She knew every pill she had to take and when she had to take them.”

Denika’s bravery beads were 90 feet long.

“We had necklaces made out of them for the pallbearers. And the students at St. Matthew’s bought bravery beads and made bracelets to give out to everybody at the funeral,” Trina said.

While Denika only attended school for two days over the last two years, Trina said, the teachers at St. Matthew’s have been amazing to the family, especially Tyrell.

“I didn’t have to pack a lunch or recess at the hospital for Tyrell. They took care of it for him. There were nights when Tyrell stayed at the hospital and went to school from there.”

Trina said she is grateful to all those who supported her family — financially, spiritually and emotionally — including Rev. Canon DavidBurrows and Rev. Lynn Courage of the Church of the Ascension inMount Pearl.

“Rev. Burrows has been our rock. I don’t know how we would have gotten through it all without him. He’s been with us since 2009.The day she passed, he was there with us the whole day,” Trina said.

Denika received great care at Toronto Sick Kids Hospital, Trina added.

Staff at the Janeway has also been there for her family through the years, she said.

“Denika had a long battle with her disease but the doctors and the nurses made her as comfortable as possible... they are an amazing team at the Janeway. They did everything they could for her right up until the last minute.”

Denika’s father was totally devoted to his daughter throughout her life.

“Joey was one of (Denika’s) pallbearers. The minister asked him if he was sure that’s what he wanted to do. Joey said, ‘I’ve carried her, her entire life. And I’m going to carry her now.’”

Trina said the staff at Barrett’s Funeral Home in Mount Pearl was amazing. 

The Parish of The Ascension, where Denika’s funeral took place, helped ensure the service was a true celebration of Denika’s life.

“There were pink and purple balloons, all of her stuffed toys were there, her flowers, her bravery beads.”

The music was also chosen with Denika in mind, Trina said.

“We sung ‘You Are My Sunshine,’ as a hymn. That was the song I sung to her every night and whenever she wasn’t well. And the music therapist (Susan Quinn) at the Janeway sang all of Denika’s favourite songs,” Trina said.

“Joey loves the song Leonard Cohen’s ‘Hallelujah.’ He used to sing it to Denika all the time.”

That song was also sung at the funeral, she said.

Following the funeral service in Mount Pearl on June 17, visitation continued at Christ Church Anglican Parish, Port Rexton on June 19. A service of remembrance was held following the visitation.

Trina said she’s grateful to Denika’s godparents Kayla and Travis Butler for everything they did for her family.

“Kayla and my best friend from Bonavista, Nicole Abbott, had a little reception for us out there... The whole community showed up to visit us and to give us cards and food. It’s amazing what people will do for you,” Trina said.

**

Beautifully painted words on a wall in the family’s home are a reminder of a daughter who will never be forgotten.

“A mother holds her child’s hand for just a short time but holds her heart forever.”