Saskatoon toddler battling rare condition preventing growth, family denied funding
The family of a Saskatoon toddler, battling a rare condition that prevents him from growing, is being denied medical funding.
Kathleen Germs says it’s been a year-and-a-half since her son Luke has grown.
“We’ve never had to buy him new clothes. Right now, he’s wearing 12-month pants and 12-month tops and he’s three-years-old,” Germs said.
After multiple visits to the doctors, Germs says her endocrinologist believes Luke suffers from a rare condition called Growth Hormone Deficiency.
Charts provided by Germs show Luke is well below the growth chart in height and weight. Luke is 33 inches and 23 pounds.
“Kids between the ages of two and three are supposed to grow two-to-four inches, he’s grown maybe two centimeters,” she said.
“A lot of times he’ll cry and say, ‘Mommy, I’m trying to keep up with my friends.’”
Germs says her son will need a growth shot every day until he’s 25.
The medication prescribed to help the toddler could cost $400,000 by the time he’s 18.
Germs received documents from the Ministry of Health denying her funding. It states, “From the information we received, this patient does not appear to meet the criteria of the drug as indicated.”
The medical test, known as a stimulation test, requires an individual to have seven samples of blood drawn. Germs says all seven results must score under 5.7 to qualify for funding in Saskatchewan.
Six of Luke’s results were in the low 1’s and 2’s, but because one of his results scored an 8 she says he can’t officially be diagnosed with the condition.
The Ministry of Health tells CTV News, “If patients wish to appeal the decision, their prescribers can submit additional information to support their request to the Ministry for reconsideration on a case-by-case basis.”
Germs says Luke’s doctor is advising she wait another year before he retake the test.
For now, Germs says she’ll turn to her insurance company for coverage, but is doubtful they’ll come through.