|MPPH Syndrome, Stage One Neuroblastoma
Before he was even born, Wells was diagnosed with the 76th case of MPPH syndrome among a mere 100 people worldwide with this condition, a rare genetic syndrome characterized as a developmental brain disorder.
Wells’ parents Chaydin and Lane, from Moose Jaw, SK, face their two-year-old son’s health care journey head-on and are thankful for the specialized maternal and pediatric care at Saskatchewan’s Jim Pattison Children’s Hospital (JPCH), where *499 Saskatchewan communities are served.
“We love our little guy so much. We wouldn’t change anything and we’re super grateful to have the Children’s Hospital in the province,” said Chaydin, Wells’ mom.
At 20 weeks pregnant, Chaydin went for a routine anatomy scan to find out Wells’ gender and was told that certain parts of his brain were non-visible. Afterward, Chaydin underwent tests including an MRI and amniocentesis at JPCH to determine Wells’ condition which resulted in his rare diagnosis of MPPH syndrome.
Since Wells was born, he has gone to many appointments at JPCH in the departments of neurology, neurosurgery and oncology. He also goes to physio, occupational therapy and speech-language pathology regularly.
“We take it day by day. We don’t know what the future holds so we are appreciating Wells for where he’s at and loving him no matter what. We want to make sure that he has the best care possible and are doing everything we can to support our little guy,” said Chaydin.
As a concerned mother, Chaydin researched screening recommendations for individuals with MPPH syndrome and was suggested to have his kidneys checked. The tests revealed a startling discovery – a tumour on his adrenal gland. After further testing, at 10 months old he was diagnosed with right adrenal neuroblastoma.
“It was pretty scary. You’re just kind of coming to terms with figuring out what it’s going to be like to have a son with special needs and then all of a sudden getting the diagnosis shortly after. It was a lot to deal with,” said Lane, Wells’ dad.
Despite his health struggles, Wells is a happy little boy with a beaming smile and an infectious laugh. He enjoys going for walks in nature, playing with his family’s dogs, hanging out with his cousins, and watching movies. Chaydin and Lane are grateful for the specialized maternal and pediatric care they continue to receive at JPCH and encourage people to support where they can.
“Before having kids, I didn’t really understand the need for a children’s hospital in our province, but I don’t think anyone does until you need it. And then you have a kid with special needs or your child gets sick, and it becomes a vital place for your family to stay in the province. We’re very lucky to have JPCH in Saskatchewan,” Lane explained.
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*Statistics from SHA reporting period April 2022 to March 2023