Rayne Bryans is a four-year-old who can capture your heart in a moment. Her big dark eyes and bright smile win over friends in an instant.
“She isn’t shy,” said her mom Tina Matijak. “She will take anyone by the hand and start telling them a story.”
As Rayne plays and laughs, it’s hard to wrap your head around the issues that she has to deal with every day. Rayne was born with Spina Bifida, an incomplete closure of the backbone and membranes around the spinal cord.
“We were told she may or may not walk and she may be mentally handicapped,” said Matijak.
Neither seems to be the case. Rayne is an active four-year-old who is very mobile and alert.
“She likes Dora and Little Einstein. She’s bright and funny and full of life.”
While Rayne suffered from hydrocephalus initially, the condition was brought under control and she no longer requires a shunt to drain fluid off her brain. Her legs were twisting, but through the use of bilateral twisters to keep them straight, Rayne has been able to walk and run alongside her friends. However, time out of the braces has caused her legs to begin twisting again and the family and doctors are currently monitoring Rayne’s growth to see if she’ll need the braces again.
While Rayne appears to be a healthy toddler, her mom has to continually watch the clock to be sure they are home in time to use the washroom facilities.
“We still go to the park. She can run, jump and fall like every four-year-old, but we have to be home every two and a half to three hours to cath her.”
Because of her condition, Rayne will never urinate or have a bowl movement on her own. She requires incontinent supplies such as catheters, alcohol wipes, vinyl gloves, saline filled syringes, and leg bags to simply take waste out of her body. The cost of the supplies is $1,500 each month.
“We aren’t ones to ask for help,” said Matijak.
While the family may not be willing to ask, they have a number of friends wanting to do their part. A close friend set up A Go Fund Me page online to accept donations.
“She said, ‘This is your child. You have to advocate for her. It’s okay to ask for help.’”
After moving to Spy Hill in June, the family discovered Rayne was not eligible for support assistance through Saskatchewan Aids For Daily Living and Group Benefits from her dad’s job will only go so far.
“We looked at Saskatchewan because of the programs in the province for kids with Spina Bifida. It’s supposed to have better programs for her but it turns out she’s too high functioning,” said Matijak.
While supplies have been covered in the past and continue to be covered for others, the rules have changed and the family has been told Rayne is not covered. Her application has been rejected twice but the family is not willing to give up.
“No one seems to know when the rules changed and they were unaware that they had,” said Matijak. “We need to bring it to the attention of the Health Minister.”
As the cost of the supplies continues each month, along with travel expenses to doctors in Regina and Saskatoon, the family is struggling to make ends meet. With the care that Rayne needs, Matijak is unable to work outside the home and having only one income makes things stressful for the family.
While the rules and regulations are unwelcome, the community spirit and support Rayne is receiving from her new friends and neighbors in Spy Hill is overwhelmingly positive.
“We’ve moved into a beautiful village,” said Matijak. “It’s a very supportive community and we can’t thank them enough.”
Through the generosity of friends and neighbors an All-Star Hockey Game was held March 13 in Rocanville to raise money for Rayne, raising more than $4,000.
“The support we’ve had has been amazing,” said Matijak. “We are so fortunate to live here.”
Money continues to come in through the online donation site. For more information on how you can help Rayne, please visit https://www.gofundme.com/raynebryans.
May 2017Download PDF