A Red Deer mother, Nicole Stenberg has unfortunately come across a bit of a gap in the province’s health care system when it came to the care of her son, Owen. Owen was born on September 28, 2021 with achondroplasia which is a common form of dwarfism.  

Stenberg only found out about her son having the condition two weeks before he was born. However, despite having to do several medical tests in his short life so far, she says Owen is a very happy baby.  

“There's been a lot of testing and a lot of XRAYS and MRI's all that sort of stuff but he's very happy very healthy boy,” she explained noting that she and Owen make several trips to Calgary for those tests to be completed.  

Due to his achondroplasia, Owen does require special care to allow for his body to grow properly. Now the family requires cranial remolding helmet, after being diagnosed with plagiocephaly which is known as a flattening of the head. 

“He was about three months when I started noticing the back of his head flattening. Because of his dwarfism, he has weak muscle tone and it is recommended by his doctors that he spend most of his time laying on a firm flat surface so that his spine doesn't develop a curve in the wrong way. Because of that, it started to flatten the back of his head. We found out shortly after that the clinic at the Children’s Hospital that used to do cranial remolding helmets, actually closed because of COVID,” said Stenberg.  

Photo of Owen. Photo of Owen submitted by Nicole Stenberg. 

The family turned towards private clinics to get Owen the 3-D printed helmet he requires but the cranial remolding helmet came at a steep price and Stenberg kept being denied for financial supports.  

“I turned to Alberta Supports in hopes that we could get some kind of assistance to pay for it because it is $3,200. We were denied by Alberta Supports and referred to the One-Time Emergency Assistance in which I applied and was also denied by them. They referred me to Family Supports for Children with Disabilities and unfortunately, the helmet does not fall under the criteria of items that they can help with. They referred us to Alberta Aids to Daily Living where they also do not cover these types of cranial remolding helmets. They only cover helmets for children with behavioral issues which is unfortunate, because that left us with nowhere to turn,” explained Nicole.  

Stenberg noted that the most common reasons that they were denied for funding was because the helmet was either not covered under their policies or the helmet was considered to be ‘cosmetic’. Like any parent though, Nicole just wants to give Owen the best quality of life possible.   

“It won't actually affect brain development or skull development or anything. It's just the shape of their head. However, especially for males, I feel like the shape of their head is quite noticeable in day-to-day living and it can affect things like wearing glasses or how you get your hair cut all of these things and especially, self-image,” said the mother.  

With nowhere left to turn, Nicole said she and her partner were considering taking out a loan to cover the cost of the helmet. Before pursuing the option, she decided to open a GoFundMe in hopes of donors supporting even a portion of the cost. Generous donors were quick to help out covering the full cost of the helmet within only a day of opening the GoFundMe.

“I was holding out hope we could raise $500. It sort of saved us so much and just to see the outpour of support from family and friends and strangers it blew me away,” added Stenberg. 

Stenberg is very thankful for the speedy support of the community. However, she hopes to bring to light the gap in coverage for her son and several others who suffer from the same form of dwarfism and face similar challenges. 

“I definitely think that there should be some awareness brought because I've heard from four different families myself just in the search to try and get funding, where the same thing happened to them. They sought out government assistance and were denied by multiple agencies. Unfortunately, a couple of them never got the cranial remolding helmets just because they couldn't afford them,” she explained.