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Jayde and Penni Smith are sharing their story ahead of the 41st annual Janeway Telethon on June 7 and 8 to help raise funds for the NL children’s hospital and share hope to other parents
Published Jun 06, 2025 • 5 minute read
Penni Smith holding her daughter, Jayde Smith for the first time, almost nine years ago. Little did Smith know in this moment that her daughter would be taken for life-saving surgery just a couple of hours after this. Photo by ContributedArticle content
Nine-year-old Jayde Smith’s doctors and nurses often say that she is the Janeway ambassador — and that’s because the Janeway is where she grew up.
At age three, Jayde was diagnosed with Mitchell-Riley Syndrome (MRS) — a rare genetic disorder — but her health complications started just a couple of hours after she was born.
Jayde’s mother, Penni Smith, said the Janeway is Jayde’s second home, and the health-care professionals who work there are their family. So, being chosen as one of Janeway’s Telethon Champion children this year feels like it was meant to be, said Smith.
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“When they asked us, Jayde was all over it. She loves anything to do with helping the Janeway because it’s such a big part of her life,” said Smith. “That’s all she knows, really.”
‘Something was wrong’
Jayde was Smith’s first child, and she describes her pregnancy as perfect, with Jayde arriving full-term.
However, after she was born, Jayde’s body temperature kept dropping, and she was vomiting bile repeatedly. At first, nurses said this was normal, but after shift change, one nurse said, “No, something is wrong.”
Once the doctors were notified, they did an ultrasound on Jayde’s stomach, and what they found was shocking.
“Nothing in her belly was attached,” said Smith.
The doctors saw that Jayde’s pancreas was wrapped around her stomach and was closing it off. She was also born without a gallbladder.
Penni Smith said the Janeway is her daughter, Jayde’s, second home, and it’s where she grew up, mostly. Photo by Contributed
The doctors told the new mom her brand-new baby would need a life-saving surgery.
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Because everything happened so quickly, Smith didn’t even have time to process it.
“All of a sudden, it was here she is, and now she’s gone,” she said, saying it felt like a dream.
Jayde was in surgery for five-and-a-half hours and remained in the NICU for 47 days after.
And during those 47 days, the ups and downs persisted, said Smith.
‘Still not thriving’
In the NICU, Jayde was completely malnourished and couldn’t gain weight. Even if she gained a couple of pounds, she would go down again. She also wasn’t absorbing nutrients, she was passing only water and fat.
After Jayde was released to go home, she still wasn’t thriving. At three months, they discovered her pancreas was still under-functioning, and she started on pancreas enzymes, which did help her absorb food.
But between three months and the age of three, Jayde was still going back and forth to the Janeway frequently as she continued to struggle.
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It was around the time she turned three that doctors suspected a genetic condition was at play because, by then, she started experiencing pancreatic issues in a new way.
Smith said little Jayde often became dehydrated from vomiting, and during one of their regular visits to the Janeway, it was revealed Jayde’s blood sugar was high due to her pancreas not producing enough.
‘Most children with this don’t survive’
From that point on, she became insulin-dependent, and it was around this same time that Jayde’s condition aligned with MRS. After genetic testing, it was confirmed that she carried the MRS gene.
However, hearing she had MRS wasn’t as hard as what would follow.
“When they sat us down at the table, and they explained to us that it looks like she has Mitchell Riley, one of the first things that they said to us was, most children with this don’t survive,” said Smith.
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Smith said she felt like a deer in the headlights.
However, she has hope and believes that is only the case when children don’t get the surgery to reverse it.
Jayde Smith holds up a thank-you card she made to thank the many doctors and nurses at the Janeway who have helped her. Photo by ContributedThree major surgeries
Jayde has had three major surgeries in her life: the first just after she was born, the second when she was around three, and her third came about two years ago — the surgery to reverse the impact MRS had on her tiny body.
Smith says that of everything they have gone through, that one of the most difficult moments. From May until September 2023, she and Jayde never left the hospital, with their time split between the Janeway and Sick Kids in Toronto.
On top of that, they were in the hospital for so long because they needed to wait for Jayde to be healthy enough to complete the surgery.
“It’s so frustrating, like seeing your child screeching in pain, there’s nothing anybody can do,” said Smith. “And she was getting defeated at this time, she was starting to give up. She was done with it.”
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By September 2023, she was healthy enough for the surgery. The morning of, Smith said, Jayde woke up smiling.
“She was happy, she couldn’t wait to get the surgery done, because she was just so done with the constant pain, throwing up,” said Smith.
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Did a complete 360
Although the surgery didn’t completely reverse Jayde’s MRS, they now deal with symptoms as they come on, and Jayde did a complete 360-degree turnaround after her third surgery.
That surgery saw the removal of one-third of her small intestine and the insertion of a G-tube.
After the surgery, Jayde started eating liquids and went to soft food, and Smith said she never needed the G-tube; she ate everything by mouth, and the G-tube was eventually removed.
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Over the past two years, Jayde has gained 20 pounds, no longer experiences pain, can eat whatever she wants and has only thrown up once since the surgery.
“I never, ever, ever thought that we would see a day where she’s healthy and doing well — never,” said Smith.
While some days she does wait for the ball to drop again, Smith is trying to come to terms with that a healthy Jayde might be their new normal.
“I need to accept the fact that Jayde is doing well, and hopefully the last surgery was what we needed, and hopefully, things stay the way they’re going,” said Smith.
Throughout the many ups and downs navigating her daughter Jayde’s rare genetic condition, Penni Smith had another child, Luke Greely, now age two. Luke, like his sister, spent a lot of time in the Janeway, as that is where he learned to crawl, but he was never sick like Jayde. Photo by ContributedWhy they’re sharing their story
Smith can’t thank the doctors and nurses at the Janeway enough for the role they have played in Jayde’s life. The care they provided was exceptional, she said.
It’s because of the role the Janeway played in their lives that they are honoured to have Jayde be a Champion Child for this year’s Telethon — it kicks off on on Saturday, June 7, from 6:30-9:30 p.m. and Sunday, June 8, from noon-7 p.m. — even though when they go to the Janeway now, it’s just for a visit.
“Because of everything we’ve dealt with, and everything they’ve done for us, you can’t thank them, you can’t make them enough. So when the opportunity to help them out comes up, it’s like absolutely,” said Smith.
Sharing Jayde’s story ahead of the telethon, Smith added, is also a way to provide comfort for other families who might be going through something similar.
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