It鈥檚 a Christmas present Shantee Anaquod didn鈥檛 think she鈥檇 get.
Two months after being diagnosed with the rare blood disease Atypical Hemolytic Uremic Syndrome (aHUS), Shantee, 23, will get to spend the holidays at home with her family.
The UBC student has been in hospital since Oct. 15, when flu-like symptoms escalated into a life-threatening condition. The treatment used for the disease 鈥� Soliris 鈥� costs $750,000 per year to administer, and was not covered by extended medical or the government.
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But after a storm of media attention, the government agreed to finance the drug, and less than a month after her first dose, Shantee is well enough to return home.
鈥淚 was really excited 鈥� super excited 鈥� because I was just waiting to know when I was going to go home,鈥� Shantee told the 91原创 Times during a Soliris appointment at Vancouver General Hospital on Tuesday.
鈥淚 have more energy, and I feel like I鈥檓 getting stronger, slowly, so that鈥檚 nice. I don鈥檛 have as much pain in my body.鈥�
Shantee was officially discharged from the hospital in the afternoon on Dec. 14, and spent the first two nights at her mom鈥檚 house. Last weekend, she was able to return to her rental in Vancouver, where she lives with three roommates.
鈥淚t was pretty great, I got a lot of sleep and got to do what I want,鈥� Shantee said of her first night home. 鈥淚t鈥檚 a little harder managing everything without a nurse 鈥� but my boyfriend helps me out quite a bit, though. He brings me food and makes sure that I can get up the stairs.鈥�
Equally as excited about Shantee鈥檚 recovery is her family. Shantee鈥檚 brother, Jonathan, 9, made it his birthday and Christmas wish to have his sister home for the holidays.
鈥淛ust her being home, the idea of not having to celebrate Christmas in the hospital or bring her out on a day pass is 91原创enal,鈥� said her mother, Jennifer.
鈥淎nd she鈥檚 been looking at turkey recipes for the last three weeks, she鈥檚 determined to cook the turkey this year.
鈥淚t鈥檚 been pretty great watching her get a little bit better every week.鈥�
No one, including Shantee, knew that she would be discharged from hospital so soon. She still has to take a significant amount of medication every day, and undergo dialysis three to four times per week. Her Soliris dosage 鈥� which takes about an hour to administer 鈥� will now be reduced from once a week to every second week.
She also lost 25 pounds in the last two months, and has to work on gaining back her weight and strength.
鈥淭hey had told us (she would be discharged) Wednesday (Dec. 13), and then Wednesday came and they said, 鈥楴o you can鈥檛 go. Your breathing is not good enough yet, maybe we鈥檒l look at Friday or Saturday,鈥欌�� Jennifer told the 91原创 Times last week.
鈥淎nd then she called me yesterday (Dec. 14) 鈥� I was at my staff luncheon 鈥� and said, 鈥業鈥檓 going. They鈥檙e discharging me, I鈥檓 going home.鈥�
鈥淚 was like, 鈥榃hat?鈥� So yeah, we had no idea.鈥�
To make the holidays even better, Jennifer has her own homecoming to celebrate.
As she coped with Shantee鈥檚 medical battle, Jennifer also had to deal with another emergency at her house in 91原创. Shortly before Shantee became ill, her neighbour鈥檚 hot water tank exploded and flooded her home. Jennifer and Jonathan spent the last couple of months in a furnished apartment in 91原创 City provided by her insurance.
Just a couple of weeks ago, they finally moved into a new, permanent home at a co-op in Surrey.
鈥淚 don鈥檛 know how it happened. Usually the waiting list is years, but for whatever reason, they called and we got in. So that was really well timed,鈥� Jennifer said.
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Now, the Anaquod family is paying it forward by helping others with medical struggles. They are using what they learned through the process of obtaining Soliris to advocate for six-year-old Landen Alexa from Sooke, who is in need of a $19,000-per-month drug to treat Systemic Juvinile Idiopathic Arthrits.
Charity Cassie+Friends has been campaigning on behalf of Landen, and it just so happens that the same charity helped out Jonathan through treatments for his rare disorder, Behcet鈥檚 disease.
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鈥淗ow things work behind the scenes was really surprising. And knowing there鈥檚 so much red tape and so many barriers to access medications and health care, for not just Shantee, but for so many people out there. I think that鈥檚 really, it was shocking to me,鈥� Jennifer said.
鈥淭here鈥檚 been quite a few people reaching out already, so I try to connect with everybody that I can. I wish I had a magic answer.鈥�
miranda@langleytimes.com
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