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<\/p>\n
Published Jun 06, 2025 \u00a0\u2022\u00a0 5 minute read<\/p>\n
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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<\/p>\n
Nine-year-old Jayde Smith\u2019s doctors and nurses often say that she is the Janeway ambassador \u2014 and that\u2019s because the Janeway is where she grew up.<\/p>\n
At age three, Jayde was diagnosed with Mitchell-Riley Syndrome (MRS) \u2014 a rare genetic disorder \u2014 but her health complications started just a couple of hours after she was born.<\/p>\n
Jayde\u2019s mother, Penni Smith, said the Janeway is Jayde\u2019s second home, and the health-care professionals who work there are their family. So, being chosen as one of Janeway\u2019s Telethon Champion children<\/a> this year feels like it was meant to be, said Smith.<\/p>\n Advertisement 2<\/p>\n This advertisement has not loaded yet, but your article continues below.<\/p>\n THIS CONTENT IS RESERVED FOR SUBSCRIBERS ONLY.<\/p>\n Subscribe now to access this story and more:<\/p>\n SUBSCRIBE TO UNLOCK MORE ARTICLES.<\/p>\n Subscribe or sign in to your account to continue your reading experience.<\/p>\n Register to unlock more articles.<\/p>\n Create an account or sign in to continue your reading experience.<\/p>\n Sign In or Create an Account<\/p>\n or<\/p>\n Article content<\/p>\n \u201cWhen they asked us, Jayde was all over it. She loves anything to do with helping the Janeway because it\u2019s such a big part of her life,\u201d said Smith. \u201cThat\u2019s all she knows, really.\u201d<\/p>\n \u2018Something was wrong\u2019<\/strong><\/p>\n Jayde was Smith\u2019s first child, and she describes her pregnancy as perfect, with Jayde arriving full-term.\u00a0<\/p>\n However, after she was born, Jayde\u2019s body temperature kept dropping, and she was vomiting bile repeatedly. At first, nurses said this was normal, but after shift change, one nurse said, \u201cNo, something is wrong.\u201d<\/p>\n Once the doctors were notified, they did an ultrasound on Jayde\u2019s stomach, and what they found was shocking.<\/p>\n \u201cNothing in her belly was attached,\u201d said Smith. <\/p>\n The doctors saw that Jayde\u2019s pancreas was wrapped around her stomach and was closing it off. She was also born without a gallbladder.<\/p>\n The doctors told the new mom her brand-new baby would need a life-saving surgery.<\/p>\n Advertisement 3<\/p>\n This advertisement has not loaded yet, but your article continues below.<\/p>\n Article content<\/p>\n Because everything happened so quickly, Smith didn\u2019t even have time to process it. <\/p>\n \u201cAll of a sudden, it was here she is, and now she\u2019s gone,\u201d she said, saying it felt like a dream.<\/p>\n Jayde was in surgery for five-and-a-half hours and remained in the NICU for 47 days after. <\/p>\n And during those 47 days, the ups and downs persisted, said Smith.<\/p>\n \u2018Still not thriving\u2019<\/strong><\/p>\n In the NICU, Jayde was completely malnourished and couldn\u2019t gain weight. Even if she gained a couple of pounds, she would go down again. She also wasn\u2019t absorbing nutrients, she was passing only water and fat.<\/p>\n After Jayde was released to go home, she still wasn\u2019t thriving. At three months, they discovered her pancreas was still under-functioning, and she started on pancreas enzymes, which did help her absorb food.<\/p>\n 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. <\/p>\n Advertisement 4<\/p>\n This advertisement has not loaded yet, but your article continues below.<\/p>\n Article content<\/p>\n 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.<\/p>\n Smith said little Jayde often became dehydrated from vomiting, and during one of their regular visits to the Janeway, it was revealed Jayde\u2019s blood sugar was high due to her pancreas not producing enough.<\/p>\n \u2018Most children with this don\u2019t survive\u2019<\/strong><\/p>\n From that point on, she became insulin-dependent, and it was around this same time that Jayde\u2019s condition aligned with MRS. After genetic testing, it was confirmed that she carried the MRS gene.<\/p>\n However, hearing she had MRS wasn\u2019t as hard as what would follow.<\/p>\n \u201cWhen 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\u2019t survive,\u201d said Smith.<\/p>\n Advertisement 5<\/p>\n This advertisement has not loaded yet, but your article continues below.<\/p>\n Article content<\/p>\n Smith said she felt like a deer in the headlights. <\/p>\n However, she has hope and believes that is only the case when children don\u2019t get the surgery to reverse it.<\/p>\n 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 \u2014 the surgery to reverse the impact MRS had on her tiny body.<\/p>\n 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.<\/p>\n 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.<\/p>\n \u201cIt\u2019s so frustrating, like seeing your child screeching in pain, there\u2019s nothing anybody can do,\u201d said Smith. \u201cAnd she was getting defeated at this time, she was starting to give up. She was done with it.\u201d<\/p>\n Advertisement 6<\/p>\n This advertisement has not loaded yet, but your article continues below.<\/p>\n Article content<\/p>\n By September 2023, she was healthy enough for the surgery. The morning of, Smith said, Jayde woke up smiling.<\/p>\n \u201cShe was happy, she couldn\u2019t wait to get the surgery done, because she was just so done with the constant pain, throwing up,\u201d said Smith.<\/p>\n Read More<\/p>\n Meet this year’s Janeway Champion Child: After being diagnosed with cystic fibrosis as an infant, St. John’s teen ‘so excited’ to help with telethon<\/p>\n <\/a><\/li>\n ‘Our little miracle’: Paradise parents spend 162 days in Janeway NICU after baby born prematurely<\/p>\n <\/a><\/li>\n<\/ol>\n Did a complete 360<\/strong><\/p>\n Although the surgery didn\u2019t completely reverse Jayde\u2019s MRS, they now deal with symptoms as they come on, and Jayde did a complete 360-degree turnaround after her third surgery.<\/p>\n That surgery saw the removal of one-third of her small intestine and the insertion of a G-tube. <\/p>\n 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.\u00a0<\/p>\n Advertisement 7<\/p>\n This advertisement has not loaded yet, but your article continues below.<\/p>\n Article content<\/p>\n 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.\u00a0<\/p>\n \u201cI never, ever, ever thought that we would see a day where she\u2019s healthy and doing well \u2014 never,\u201d said Smith.\u00a0<\/p>\n 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.\u00a0<\/p>\n \u201cI 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\u2019re going,\u201d said Smith.<\/p>\n Smith can\u2019t thank the doctors and nurses at the Janeway enough for the role they have played in Jayde\u2019s life. The care they provided was exceptional, she said.<\/p>\n\n
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Penni Smith said the Janeway is her daughter, Jayde\u2019s, second home, and it\u2019s where she grew up, mostly. Photo by Contributed<\/p>\n![\"Jayde](\"https:\/\/www.europesays.com\/uk\/wp-content\/uploads\/2025\/06\/0613-janeway-telethon-feature-ck-3_296014749.jpeg\")
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<\/strong><\/p>\n\n
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Throughout the many ups and downs navigating her daughter Jayde\u2019s 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\u2019re sharing their story<\/strong><\/p>\n