'Hopeless and helpless': Regina mother seeks help to treat rare spinal disease
Mary Grace Rico has spent the past seven years seeking medical help for what began as chronic pain.
She struggled to find a physician who would give her a diagnosis as opposed to a prescription for pain medication.
"My thinking was, 'Oh, I'll get, that treatment because without the proper diagnosis ... they'll just give me pain reliever after pain medication ... I need a treatment. Not only pain medication like you just give me pain medication. After pain medication, it's drugs. It's not helping me at all," Rico explained.
The now 46-year-old often found herself having to advocate for more thorough assessments.
After struggling to receive a diagnosis in Canada, Rico and her husband sought a second opinion out of the country, first with an American doctor and then in the Philippines.
When she finally received the diagnosis of a rare spinal condition: tethered spinal chord with SRRINX, a fluid cyst in her cervical spine and C4 SYRINX and cervical and Lumbar Stenosis with myelopathy in her lumbar region, she had hope that it might lead to a solution.
After travelling to Blusson Spinal Cord Centre in Vancouver, with the paperwork and diagnosis she received, Rico was told that they were unwilling to perform the surgery due to risk of paralysis.
Mary Grace Rico is seeking help in getting treatment for a rare spinal condition. (Submitted by Mary Grace Rico)
"It's really heartbreaking. So we came back from Vancouver with the heartbreak and I feel hopeless and helpless ... he explained to us that once he open[ed] it, there will be more problem[s]. It will get me paralyzed," Rico said.
As the pain increased, Rico's day to day mobility became worse. She had to take a leave of absence from her job as an LPN and struggles to move around her home.
"I think of my kids, my twins, I'll be disabled. They will have [a] mother that can't help them like a normal mother. So I cried a lot," she said.
Rico travelled back to the Philippines and met with a neurosurgeon who was confident in their ability to perform the two surgeries on the cervical and lumbar regions of her spine.
"I was crying, because it's hard to accept that. I mean, I need to undergo with those kind of procedure[s], it's really scary. I know it's scary because it's in my cervical. And the doctor explained to me thoroughly what's going on with my spine. What really breaks my heart was she said that 'You are too young to be in the wheelchair,'" Rico said.
"There's a neurosurgeon that could help me with my situation, there's, hope. I was really positive, because the doctor that I talk[ed] to is really nice, and I know that she's really good. She knows what she's saying."
The procedure also comes with a $100,000 price tag, something which has caused immense stress on Rico and her family. She credits the support of her church, Regina's BibleWay Baptist Church as a major support.
"My church family here in Regina, they’re really a blessing to us. They really support us. Like, not only work our prayers, they care a lot to support us financially, emotionally, spiritually ... I'm really grateful to have them, especially with my situation, the help with my with my husband and my kids. So because here in Regina, we don't have any relatives here in Regina."
A member of the congregation set up a GoFundMe page in the hopes of helping out the Rico family.
"We plan to sell the house. And at the same time, we're asking help from the GoFundMe because even if we sold the house, [it's] not enough," Rico said.
Mary Grace Rico is seeking help in getting treatment for a rare spinal condition. (Submitted by Mary Grace Rico)
Rico has reached out to Saskatchewan's Ministry of Health in an attempt for support or alternative options available within Canada, but did not hear back.
In a statement provided to CTV News, the Ministry of Health said; "It is the physician's responsibility to provide information regarding appropriate care and, when required, refer patients for care outside of the province and/or Canada through an appropriate referral process when the required service is not available in Saskatchewan."
"Coverage for out of country treatment is only considered in exceptional circumstances and under certain conditions. The key requirement for out-of-country medical services is that the services requested are not obtainable in Canada's publicly funded health-care system ...The treatment must be considered the standard of care, not experimental or part of a clinical trial," the statement went on to say.
The ministry went on to outline the process for out-of-country referrals which includes a specialist physician requesting approval from the Ministry of Health, describing the situation and advocating for the patient.
After struggling to be taken seriously by doctors, going so far as to switch her family physician, Rico is frustrated with the lack of advocacy from her health care providers.
"I said to him [the doctor], ‘No, it's not just migraine. I know there's something wrong with me,’" Rico said.
Despite an uncertain future, Rico's husband, kids and church inspire her to have hope.
"I have that positive view that one day I'll be healed with that surgery ... Just to look at the positive side that one day, in God's time, the help, the right help will come."
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