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Newfoundland child with incurable disease living life filled with love, family and friends

Colleen Kennedy is pictured with her daughters, Kayla Kennedy, now 18, and Olivia Reardon, and the family’s dog, Chloe, on Aug. 27, 2018, as the family celebrated Olivia’s ninth birthday.
Colleen Kennedy is pictured with her daughters, Kayla Kennedy, now 18, and Olivia Reardon, and the family’s dog, Chloe, on Aug. 27, 2018, as the family celebrated Olivia’s ninth birthday. - Contributed

Living life to the fullest

ST. JOHN'S, N.L. —

There was a time when Colleen Kennedy travelled as far away as Utah, desperately searching for a cure for Pearson syndrome.

Kennedy’s daughter, Olivia Reardon, was diagnosed with the rare blood disorder just days before her first birthday.

Her family was told she likely wouldn’t live to celebrate her fourth.

“My trip to Utah was to find a cure early on, but I quickly found out that the doctors at the Janeway were going to be the ones to support us on our crazy journey through such a devastating disease,” Kennedy said, answering questions via online private messenger.

Pearson syndrome is a mitochondrial disease which causes anemia and multiple system failures.

Despite the grim diagnosis, Olivia has come further than her doctors initially imagined. She will celebrate her 10th birthday in August.

Complicated disease

Olivia Reardon holds her mom’s hand in the Janeway’s Pediatric Intensive Care Unit in September 2018.
Olivia Reardon holds her mom’s hand in the Janeway’s Pediatric Intensive Care Unit in September 2018.

I first met Olivia at the playroom in the Janeway when she was two years old. She served me pink-and-white plastic cupcakes and invisible tea from a tiny blue cup.

At about the same time, I had also seen her at a blood drive at Canadian Blood Services in St. John’s, NL. As a result of her condition, Olivia required blood transfusions for almost four years.

I’ve done other interviews with Olivia’s mother over the years. However, rather than meet in person with Olivia present, we chatted privately online.

When I got together with Olivia and her mother at the Janeway on Feb. 15, where Olivia was an outpatient undergoing tests in the children's hospital's cardiology department, I was shocked at how life had changed for this once chatty and outgoing child.

In September 2018, Olivia was diagnosed with diabetic ketoacidosis (DKA) – a serious complication of diabetes. She ended up in the Janeway’s pediatric intensive care unit.

“After Olivia’s DKA was controlled, she woke up blank. It was so scary. No smiling, no crying, almost no feelings since September. But she’s come around a little, thankfully, and makes the most of what she’s been dealt,” Kennedy said.

“Oli’s struggles these days are real and it has taken a large toll on her little body. We have been blessed with a few good years of what I’d call good health, if there’s such a thing when fighting a terminal illness like Pearson’s syndrome,” Kennedy added.

Family, community support

Colleen Kennedy prepares to administer her daughter Olivia Reardon’s medicines through her feeding tube Feb. 15. Olivia has Pearson syndrome, a devastating disease with a grim diagnosis.
Colleen Kennedy prepares to administer her daughter Olivia Reardon’s medicines through her feeding tube Feb. 15. Olivia has Pearson syndrome, a devastating disease with a grim diagnosis.

Children like Olivia, who survive Pearson syndrome, often develop another mitochondrial disease called Kearns-Sayre syndrome.

Olivia is now transitioning from Pearson’s to Kearns-Sayre.

“Beating the earlier disease (Pearson syndrome) has brought her to this,” Kennedy said.

Kearn-Sayre syndrome can cause muscle weakness, deafness, kidney problems and dementia.

Olivia has lost her ability to walk. Even with an insulin pump, she has uncontrolled diabetes. She is losing her eyesight as well as her hearing. Her pancreas, kidneys and other organs are also compromised.

Kennedy gives her daughter a cocktail of medicines four times a day through a feeding tube.

“Thankfully, Olivia’s support from the community, and surrounding communities and provinces, is there to help her financially afford medications that are necessary to maintain a quality of life that’s good for her.”

Kennedy is Olivia’s around-the-clock caregiver.

“I couldn’t imagine someone else, at this point of her illness, come in and do what I do,” she said.

Kennedy is also fierce in protecting Olivia, not only from germs and anything else that could make her even sicker than she is, but from any talk about her illness.

Olivia has no idea she is as sick as she is, Kennedy said, which is why during the interview at the Janeway, talk is focused on the positives with the reality left for conversations via private messenger.

Olivia loves school, tea time, sleepovers, dinner dates and visits from family and friends.

She also enjoys spending every second weekend with her father, Brendon Reardon, where she loves playing with her cat, Waffles.

Kennedy is thankful to the support system of family and friends - including those she corresponds with online through a private Pearson syndrome Facebook group - who have been there for her over the years.

“And the staff at the Janeway have been amazing. From doctors, nurses, administration, kitchen and cleaning,” she said.

The family lives in Conception Harbour on Newfoundland’s Avalon Peninsula. Olivia’s illness affects the entire family, Kennedy said, especially Olivia’s older sister, 18-year-old Kayla Kennedy.

“Kayla helps out, but finds it very difficult to watch her sister struggle and watch Mom be torn apart trying to keep it all together,” she said.

It has been said that the biggest fear in life is fear of the unknown.

Kennedy is angry about what the disease has taken from Olivia and scared beyond words of what the future has in store for her child.

Yet that’s something Olivia will never know.

“It is my mission that Olivia lives life to the fullest and knows no better about how seriously ill she truly is,” Kennedy said.

A life filled with love

During the interview at the Janeway, Reardon checks Olivia’s blood sugars. She reaches for the pump on her daughter’s side and makes adjustments to the insulin.

She draws up several syringes of medicine, which she puts into Olivia’s feeding tube.

Olivia is curious about the stranger in the room. When her mother reminds her that the woman is there to ask her some questions, Olivia nods her head.

Over the next half-hour, Olivia answers questions – slowly, but clearly.

Often, she puts her tiny pointer finger in the air, as if knowing it’s going to take her a while to get her answer from her mind to her mouth.

“Ch-loe, A-me-li-a, Is-a-bell-a, Le-ah, A-la-na,” Olivia said, when asked about her friends who visit her and the ones she plays with at school.

Olivia nods when asked if she likes coming to the Janeway. Again, it takes time and effort for her to find her words.

“Doc-tor Price, Doc-tor Critch, Doc-tor Tur-ner and Doc-tor Hic-key,” she said naming some of the health professionals who take good care of her.

“And Bren-da,” she said referring to recreation therapy worker, Brenda Poole, who is also a good friend of the family.

Olivia will always come first for Kennedy – from this day, until the end.

The child’s life is filled with love, family, friends, and great memories.

It’s the ending to this love story that Kennedy would give anything to change.

But this mother knows not all wishes can come true.

danette@nl.rogers.com.

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