Telethon

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Our Kids

Our Janeway Kids

Each and every one of our incredible Janeway Kids has a story to tell.  From the neonatal intensive care unit (NICU) to emergency (ER) – from surgeries to specialized, much needed treatments – throughout every department and every service within the Janeway, our Kids inspire us with their courage and determination.

This year for the 2021 Janeway Telethon you will have the opportunity to read about, or see, our amazing Janeway Kids.   Some of their stories will be shared through print and social media, while others will be shared through produced pieces to air during Telethon Weekend.

Here are some of their stories.

Janeway Kids

Champion Child, Xavier Rodrigues (Crohn’s Disease)

Xavier is a fighter!  Crohn’s will never beat this amazing young man!

Xavier was just seven years old when his medical journey began.  A journey that he and his family could never have imagined, would last a lifetime.

Xavier loved hockey and was on the rink three times a week.

But, at the age of seven, he became very sick. He had no interest in food, lost weight, and became weaker each day. After numerous trips to the Janeway and many tests, Xavier continued to become sicker. Finally, he was admitted to the hospital and within days his doctor diagnosed Crohn’s, a bowel disease that causes chronic inflammation.

Most people with Crohn’s disease can enjoy healthy, active lives. While there isn’t a cure, treatments and lifestyle changes can keep the disease in remission and prevent complications. But finding that right balance can be tricky.

Through trial and error, Xavier was put on numerous medications. These medications came with painful injections of a chemotherapy given at home and a day-long intravenous (IV) infusion at the hospital every six to eight weeks.

Xavier missed a lot of school but with the support of his teachers and friends, he managed to keep up. He then got his second wind when one medication finally succeeded.

Xavier did well for two years until that medication became ineffective and they had to try another. He was hospitalized again, found another one that worked, and has been doing better ever since.

He currently has an IV-infusion every eight weeks. Plus, he is on a restrictive diet to help manage his symptoms – meaning no typical foods for a teenager like processed food, sugars, or carbohydrates.

Xavier gave up hockey because of lower energy levels and to avoid getting accidentally hurt. But he is now active in lots of other wonderful ways, playing video games and making YouTube videos with his friends.

“They were so genuinely concerned about Xavier. I can’t say enough beneficial things about the way the Janeway treated us and our son.”   Dad, Lionel

Miracle Kid, Raya Murray (Rett Syndrome)

Raya has been described by many as a ray of sunshine!  Raya lights up a room, and puts a smile on the faces of all those around her.  Even her therapy horse Pickles, that she absolutely loves, is so gentle with Raya.

Just before Raya’s second birthday, she was diagnosed with Rett Syndrome, a rare neurological disorder that leads to severe impairments that affect all aspects of her life, her ability to speak, walk, eat, and even breathe easily.  Rett Syndrome causes almost consistent hand movements, making purposeful hand use nonexistent.

Raya has a team of medical professionals at the Janeway who see her regularly, Drs. Martin, O’Dea, Buckley and Bramwell and her therapists in Development and Rehabilitation.  And of course, Pickles, her therapy horse at Rainbow Riders.

Raya actually took her first steps with her physiotherapist Shawna Sparkes.  As mom said, “there was not a dry eye in the rehab gym that day, it was the best day of their lives.  The Janeway Team are like family.  Shawna is such a kind, caring person, she knows how far to push Raya to get the best results and she always has time for a cuddle. 

Mom contributes Raya’s progress to the care she receives at the Janeway from her incredible Team.

Miracle Kid, Aiden O’Keefe (Acute Lymphoblastic Leukemia)

Aiden’s strength and resilience is an inspiration to all who know him.

Aiden loves sports, video games, spending time with his family and friends and, of course, teasing and having fun with his younger sisters.

But in December 2020, just weeks before Christmas, Aiden and his family would move to St. John’s to be closer to the Janeway and the treatments and care that he would need.   December 11 Aiden was taken to the hospital in his hometown of Goose Bay with severe upper leg and groin pain.  Blood work revealed that there was something serious happening to Aiden.

On December 14, 2020, Aiden was diagnosed with B-Cell Acute Lymphoblastic Leukemia and he and his family would spend the next 10 months living close to the Janeway at Ronald McDonald House.

When Aiden was first diagnosed, he was at the Janeway daily.  Now that he is in the maintenance rounds of his treatments, he travels to the Janeway every three to four weeks from his home in Goose Bay.   To date Aiden has had numerous blood tests, two bone marrow biopsies, several lumbar punctures, three surgeries, x-rays, ultrasounds, a head CT and so much more.

Christmas 2020 was spent at the Janeway.  As mom Donalda recalls, “that Christmas was very special to us.  One that will never be forgotten.  We decorated Aiden’s room at the Janeway with lights, decals, homemade construction paper chains, a snowman on his bathroom door and a small tree in the corner.  There were pictures that his sisters drew for him and gifts from different Janeway departments and so many others.  Santa even came by for a visit.  Everyone went above and beyond for Aiden, and I am truly thankful.”

After Aiden finishes his treatments in April 2023, he will continue his check-ups at the Janeway with his oncology team to ensure that all is OK.

Miracle Kids, Maggie and Beth Ryan (Twin to Twin Transfusion Syndrome)

Maggie and Beth’s story began when mom Heather was just 17 weeks pregnant and diagnosed with TTTS (twin-to-twin transfusion syndrome, a rare pregnancy condition affecting identical twins or other multiples.)  The twins were given an extremely low chance of survival.  But these little fighters had other plans.

Mom needed surgery right away to ensure their babies had every advantage possible to survive.  Through the worry and fear of the unknown Mom and Dad Frank faced every obstacle, travelling to Mount Sinai for emergent surgery and then being closely monitored by the Janeway Team, as mom was at a higher risk of preterm labor.

At 28.5 weeks gestation the twins were ready to meet their mom and Dad.  Maggie was born at 2lbs. 14 oz. and Beth at 2lbs. 11 oz.

Both Maggie and Beth immediately needed oxygen and help breathing and were rushed into the NICU for the special care that they required.  68 days later, Maggie and Beth were ready to go home, an incredibly happy day for mom and dad and big brother, Charles.

“The Janeway provided our girls with specialized medical knowledge and technology that allowed our tiny but mighty fighters to thrive.  They are truly our little NICU Warriors!”    Mom – Heather

Miracle Kid, Hunter Whelan (Ependymoma – a rare slow growing tumor)

Brave, courageous and determined, three words that certainly describe Hunter!

On October 17, 2020, 11-year-old Hunter, underwent an extensive eight-hour surgery at the Janeway to remove a rare tumor from his spine.

For years he had been suffering through extreme pain, both in his back and his legs. He developed problems eating and kept losing weight.

There were so many visits to doctors and the emergency room, with diagnosis ranging from growing pains to a spinal disc problem. No matter what was tried, nothing worked.

On Thanksgiving weekend 2020, Hunter was in agony. He was rushed to the Janeway emergency room, where a bone specialist, was called in. He watched Hunter walk and ordered an MRI right away.

Hunter had a large, slow-growing tumor located on his spine.  Hunter went through an almost eight hour surgery, recovery and rehabilitation. The pathology results confirmed the tumor was benign and Hunter’s neurosurgeon confirmed they got it all!

“The team at the Janeway helped us through the scariest time in our lives.  We are forever grateful.”      Mom, Gill

 

Stay tuned for information about Hospital Features and talented Entertainers and Hosts who will be joining us for the 2022 Janeway Children’s Miracle Network Telethon.