Calgary baby in need of special helmet not covered by the province

A Calgary mom says she’s been overwhelmed by aupport, as she tries to raise money to pay for a special helmet for her infant daughter. Watch video on CTV News. Julie Young organized a fundraiser. Julie Young photo.

Brenna Rose, CTV News Calgary January 25, 2021

CALGARY — A Calgary infant in need of a specialized helmet will get it, thanks to the generosity of friends, family and total strangers.

Julie Young’s granddaughter, Mikylah Rose, was born with a rare cognitive disorder called Rhombencephalosynapsis. She also learned shortly after her daughter gave birth that the infant would need a specialized helmet.

“It’s for not only the head shape because she has a flat head this is going to help with the strengthening of her neck muscles,” Young told CTV News.

The cost – between $3500 to $5000 – Young says is too much for her 23-year-old daughter, who is unemployed and a single parent.

According to the province, the helmets are only covered for infants needing them for daily use to ‘protect against self-abusive behaviour or seizure disorder and to protect or facilitate healing of chronic wounds or cranial defects.’

Helmets for cosmetic flat-head shape issues haven’t been covered since 2011. Instead officials say that can be treated with physical therapy.

“We just want to give our granddaughter the best quality of life that she possibly can have. It’s not just her. I’m sure there’s a lot of families out there who have gone through the same thing,” said Young.

Thousands of dollars have been raised through a GoFundMe page for the helmet and to go towards doctors appointments, which the family fears will add up quite quickly.

The CJAY 92 Kids Fund also donated $1000 to the cause.

The family is grateful for all the support, especially since they say they weren’t fully aware of all the costs they’d be facing when Makylah was first diagnosed.

“I know we aren’t the only people out there having issues with things not being covered. I just want people to be aware. We should have asked some more questions but of course you don’t know until you go through it,” said Young.

Makylah will be fitted for her helmet in the coming weeks.

A Calgary family are grateful to people for helping them buy a special helmet to protect baby Mikylah Rose, who has a rare cognitive disorder. CTV News Calgary

Source CTV News Calgary

  Further reading

Rhomboencephalosynapsis: Review of the Literature, Fouda MA, Kim TY, Cohen AR. World Neurosurg. 2022 Mar;159:48-53. doi: 10.1016/j.wneu.2021.12.062. Epub 2021 Dec 22.

Rhombencephalosynapsis: Fused cerebellum, confused geneticists, Aldinger KA, Dempsey JC, Tully HM, Grout ME, Mehaffey MG, Dobyns WB, Doherty D. Am J Med Genet C Semin Med Genet. 2018 Dec;178(4):432-439. doi: 10.1002/ajmg.c.31666. Full text

Rhombencephalosynapsis: a hindbrain malformation associated with incomplete separation of midbrain and forebrain, hydrocephalus and a broad spectrum of severity, Ishak GE, Dempsey JC, Shaw DW, Tully H, Adam MP, Sanchez-Lara PA, Glass I, Rue TC, Millen KJ, Dobyns WB, Doherty D. Brain. 2012 May;135(Pt 5):1370-86. doi: 10.1093/brain/aws065. Epub 2012 Mar 26. Full text

Rhombencephalosynapsis: new findings in a larger study, Barth PG. Brain. 2012 May;135(Pt 5):1346-7. doi: 10.1093/brain/aws089. Epub 2012 Apr 4. Full text

Mobility Menu

follow us in feedly

Call 403-240-9100