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Community rallying to help Port Rexton child

Denika Bailey with her brother Tyrell Bailey and the children’s parents Joey Bailey and Trina Moss.
Denika Bailey with her brother Tyrell Bailey and the children’s parents Joey Bailey and Trina Moss.

A benefit dance will take place at the Clarenville Lions Den on Jan. 28 for a seriously ill child from Port Rexton.

Denika Bailey, 11, suffers from a rare autoimmune disease called ROHHAD-NET Syndrome.

ROHHAD stands for rapid-onset obesity with hypothalamic dysfunction, hypoventilation and autonomic dysregulation. NET refers to the added formation of neural tumours.

Denika’s mother Trina Moss is from Princeton. Her father Joey Bailey is from Port Rexton. The couple also have a nine-year-old son, Tyrell Bailey.

Denika has been through a lot over the years. The disease has caused her to gain weight and she is now over 300 pounds, her mother told TC Media.

She’s been in hospital for most of the past two years.

 “From Aug. 17, 2015 to today (Jan 14, 2017), Denika has had seven weeks home (out of hospital) and that’s not consecutive,” said her mother.

Denika Bailey, 11, suffers from a rare autoimmune disease called ROHHAD-NET Syndrome.

ROHHAD stands for rapid-onset obesity with hypothalamic dysfunction, hypoventilation and autonomic dysregulation. NET refers to the added formation of neural tumours.

Denika’s mother Trina Moss is from Princeton. Her father Joey Bailey is from Port Rexton. The couple also have a nine-year-old son, Tyrell Bailey.

Denika has been through a lot over the years. The disease has caused her to gain weight and she is now over 300 pounds, her mother told TC Media.

She’s been in hospital for most of the past two years.

 “From Aug. 17, 2015 to today (Jan 14, 2017), Denika has had seven weeks home (out of hospital) and that’s not consecutive,” said her mother.

Denika Bailey with her father Joey Bailey.

“Every year she has a lengthy hospital stay but usually she’s feeling well enough for us to get passes to go home.”

Since May of 2016, however, there have been no passes.

“She’s just not well enough to go home,” Moss said.

Denika spent over six week at Toronto’s Sick Kids in November-Decembe, 2016, where she underwent surgery to prepare her for dialysis.

A patient at the Janeway, she undergoes dialysis several times a week at the Health Sciences Centre.

Moss said there are only about 75 cases of ROHHAD Syndrome worldwide. Her daughter was the first case ever seen at Sick Kids, she said.

“We are (at Sick Kids) every year, several times, when she is able to go,” Moss said.

The family was living in Port Rexton when Denika got sick. They moved to St. John’s in 2009 to be closer to the Janeway and have been living there ever since.

Denika has been very sick this past few weeks, Moss said.

“They’re not really sure what they can do for her – or if there is anything they can do for her at this point,” she said.

Having a critically-ill child is one of the most difficult challenges parents may face.

Oftentimes, financial worries are added to the emotional turmoil.

Moss spends all of her time at the Janeway.

Denika’s father has been off work since she was hospitalized over eight months ago.

“I’m here all the time and Joey comes down in the night time and helps with her care. And Tyrell comes back and forth. He stays here, too, when Denika is well enough; when she’s not well it’s really hard for him,” Moss said.

Moss said she is extremely grateful to Denika’s godparents, Travis and Kayla Jones of Port Rexton, for hosting an online auction and setting up a Go Fund Me page to help raise money for her family.

It’s difficult to find words to thank people who supported and donated items for the auction as well as those who have contributed to the Go Fund Me initiative, she said.

Moss said it’s overwhelming to know so many people care about Denika and want to help her family.

“We’ve always found it difficult (financially) but we’ve been really strapped since Joey has been off work. Words can’t express how thankful we are. It will help us a lot.”

Moss said she’d like to thank Denika’s doctors, nurses and other health professionals at both Sick Kids and the Janeway for the care her daughter has been receiving through the years.

“Denika’s doctors at Sick Kids and her doctors here talk all the time... (ROHHAD Syndrome) is so rare. Every day it’s a challenge.”

Because of her daughter’s lengthy stays at the Janeway, Moss said, staff know Denika well.

“The janitors, maintenance, PCAs, nurses ... if they are off, they’ll come by when they get back to see how Denika is doing. And now we’re getting used to the adult world because Denika is doing dialysis (at the Health Sciences Centre).”

Moss is also grateful to Joey’s aunt, Princeline Murphy, of Port Rexton.

“She’s been pretty much raising my son for me. She’s been coming in and staying at my house, cooking and cleaning and looking after Tyrell, taking him to school, doing homework with him, taking our laundry from the hospital... without her, I don’t know what I’d do,” Moss said.

Moss reiterated several times during the phone interview how grateful her family is for the support they have been getting.

“It’s not only the donations. People have dropped food off to us and have come to visit Denika... When we were in Sick Kids a lot of people sent letters and cards to Denika. We just want everybody to know how much this all has meant to us,” she said.

To contribute to the online fundraising site visit www.gofundme.com and search “Denika Bailey.”

danette@nl.rogers.com

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