NEWFOUNDLAND AND LABRADOR
Friends and family of nine-month-old Kaden Miller are coming together to help raise funds for him and his parents Cory Miller and Kristel Vankoesveld to travel to Toronto in October to meet with Dr. Christopher Forrest, Division Head of Plastic and Reconstructive Surgery at The Hospital for Sick Children.
A benefit dance was held for him in Marystown on Friday, Sept. 28, and a number of other fundraisers are planned, including 50/50 draws and tickets sales.
Kaden was diagnosed with Beckwith-Weidmann Syndrome (BWS), rare overgrowth disorder, shortly after his birth. His tongue is enlarged on one side. His father Cory is originally from Marystown and the family now lives in Conception Bay South.
Initially the family was told it could be up to a year to see a specialist. Then, in July, they got the call with an appointment to see a doctor at the Sick Kids hospital.
The family will fly out on Oct. 16; Kaden is expected to undergo surgery on his tongue on Oct 22.
Vankoesveld told The Southern Gazette she hopes the surgery will improve Kaden’s ability to drink and chew food, and resolve breathing issues caused by the disorder.
They hope to return to Newfoundland on Nov. 4, but Vankoesveld says that will depend on how quickly Kaden recovers following surgery.
The couple’s seven-year-old daughter will stay behind in Newfoundland with her grandparents.
“It pulls at your heartstrings,” Vankoesveld told The Southern Gazette, “because you have to be in this one spot with a baby that need this surgery and need to recover, but you also got to think about your other child and your family — how this is kind of uprooting it, even for whatever amount of time, it’s hard.”
Vankoesveld said she and Cory were shocked when doctors confirmed that their son had BWS.
“It was devastating,” she said. “We had no idea that anything was wrong, when I was pregnant there was no indication of anything, and then to be told that he has this rare genetic disorder…”
She explained there were three main factors that led doctors to test Kaden, one of which was his weight at birth; he was 11 pounds 7 ounces.
“He also had other signs of BWS, which is a crease in his ear…and his tongue was larger on the one side,” his mother explained.
Blood work also confirmed the doctors’ suspicions.
Kaden will be watched by a team of physicians until he turns eight years old.
“Every three months he has to have blood work (and) . . . ultrasound because with this syndrome, (there is) a higher risk of children developing cancer.”
Vankoesveld says Kaden’s birth was scary. It was a difficult delivery, she said, and “We almost lost him.”
For information on how you can donate to the family contact Alice Miller at (709) 277-5592 or by e-mail at email@example.com.
What is Beckwith-Weidmann Syndrome?
According to information found the website for the National Organization for Rare Disorders (NORD) BWS is a rare overgrowth disorder, it is characterized by a wide spectrum of symptoms and physical findings that vary in range and severity from person to person. However, in many individuals, associated features include above-average birth weight and increased growth after birth, an unusually large tongue, enlargement of certain internal organs and abdominal wall defects.