An Edmonton mother is speaking out about the health care system in the province, saying she’s fed up with the constant fight to have oxygen funded for her sick daughter who is living with an incurable disease.

Lisa Lohin’s four-year-old daughter Enna has a genetic condition called spinal muscular atrophy. Her weakened muscles means Enna can’t speak, eat, sit or walk.

Enna was diagnosed when she was about two months old. At the time, doctors said she had weeks, maybe a few months, to live.

“It was like a time bomb,” Lohin said. “I kept looking at her eyes and seeing her smile and seeing she was so full of life regardless of what the doctors kept telling me and saying there wasn’t anything we can do.”

Lohin’s family took a proactive approach to Enna’s care, which is what they credit to why she’s still alive today.

“She has stayed with us for four and a half years. We’ve been pretty lucky.”

But it’s been a difficult four years.

Along with paying for a number of different medications and equipment to help Enna survive, the family has to have oxygen on-hand at all times.

That comes at a cost that Lohin believes the province should be funding.

“Every year we have to have a qualified for oxygen,” Lohin said.

This year, Lohin says Enna did not qualify to have oxygen funded by Alberta Health Services because she did not meet the Alberta Aids to Daily Living (AADL) requirements.

The Alberta Aids to Daily Living program helps Albertans who have a long-term disability, chronic illness or terminal illness. Click here for more information about AADL.

In order to be eligible for oxygen therapy funding, AADL requires proof that a child’s oxygen level dip below 89 per cent.

Lohin said Enna had to show she was below 89 per cent for two minutes, something that could seriously harm her.

“Her face starts changing colour at 89, you’ll start seeing her face turn purple, you’ll start seeing her sweat, you’ll start seeing her cry,” Lohin said.

“If we have to let Enna go that low to be able to qualify for oxygen, then we are putting her life at risk. She can end up dropping very quickly without the oxygen and letting her sit for so low for so long can eventually kill her.”

Leanne Reeb with Alberta Health Services and AADL says there is no time requirement for the test.

“There is not a requirement that it be sustained for ‘x’ period of time,” Reeb said.

“It just requires testing data that their oxygen level is dipping to that (89 per cent).”

Lohin said Enna failed to meet the requirements, which would typically mean her family has to pay for oxygen themselves at a cost of $500 a month; however Lohin was recently told Enna’s oxygen will be funded for at least the next year.

Still Lohin worries about going through another battle when it comes time for next year’s annual test.

Local pediatrician Dr. Lyle McGonigle says the AADL guideline for oxygen doesn’t work for all children, and believes a change should be made.

“AADL needs to re-look at their policy for kids and what they’re going to pay for oxygen at home for children,” McGonigle said.

“There has to be some exception, there has to be some way around that strict rule that these are the qualifications to qualify for oxygen.”

He says families are being stretched beyond their limits.

“Their expenses are high in all aspects for the care of this child and not all of it is covered by our health system or our social service system so it does create difficulties,” he said.

Reeb says the AADL guidelines put in place are done so after careful research and are based on evidence.

“Those are really established by a medical advisory committee based on research, best practice and clinical evidence,” she said.

Reeb believes the guidelines are effective, but says AADL is always open to reviewing special circumstances if some children don’t meet requirements but need oxygen.

“For now, the guidelines we think are effective and follow best practice and clinical evidence and where we have a situation where they don’t appear to be meeting the needs of the child, we do have a process to consider them for an exception to make sure that we do the right thing and make sure that kids who need oxygen get oxygen,” Reeb said.

She adds yearly testing is necessary to ensure AADL continues to meet the needs of children.

“The review being in place every year is really intended to make sure that we’re still doing the right thing for kids and to have a time in place where we review, make sure the situation hasn’t changed,” Reeb said.

It’s all proven very stressful for Lohin’s family, as well as others families who have children in need of oxygen, and Lohin believes it is time for guidelines to change.

“It’s very frustrating. I’ve heard other moms talk about how they pretty much have to let their children drown in their secretions basically to qualify for oxygen,” Lohin said.

“They need to review everything and to understand that these are children and they shouldn’t have to struggle for oxygen, they need oxygen. It’s sad they have to literally fight for it this way.”

Reeb says when evidence changes, AADL guidelines will change.

“The guidelines will change as evidence changes. We want to make sure that our program follows the best practices and the clinical evidence to ensure that we’re providing the best possible service to our clients,” she said.

AADL funds about 11,000 Albertans each year, including about 150 children.

With files from Carmen Leibel