Shantee Anaquod pictured with her younger brother, Jonathan, before becoming sick. After two months of being bed ridden in a hospital, Anaquod gets to spend Christmas at home with her family. Submitted photo

VIDEO: AHUS patient Shantee Anaquod is home for Christmas

Less than a month after receiving first dose of $750K drug, 23 year old healthy enough to go home

It’s a Christmas present Shantee Anaquod didn’t think she’d 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 — Soliris — costs $750,000 per year to administer, and was not covered by extended medical or the government.

READ MORE: Langley mom pleads for help in securing $750,000 life-saving drug for daughter

READ MORE: Government approves funding of $750,000 drug for B.C. woman

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.

“I was really excited — super excited — because I was just waiting to know when I was going to go home,” Shantee told the Langley Times during a Soliris appointment at Vancouver General Hospital on Tuesday.

“I have more energy, and I feel like I’m getting stronger, slowly, so that’s nice. I don’t have as much pain in my body.”

Shantee was officially discharged from the hospital in the afternoon on Dec. 14, and spent the first two nights at her mom’s house. Last weekend, she was able to return to her rental in Vancouver, where she lives with three roommates.

“It was pretty great, I got a lot of sleep and got to do what I want,” Shantee said of her first night home. “It’s a little harder managing everything without a nurse … but my boyfriend helps me out quite a bit, though. He brings me food and makes sure that I can get up the stairs.”

Equally as excited about Shantee’s recovery is her family. Shantee’s brother, Jonathan, 9, made it his birthday and Christmas wish to have his sister home for the holidays.

“Just her being home, the idea of not having to celebrate Christmas in the hospital or bring her out on a day pass is phenomenal,” said her mother, Jennifer.

“And she’s been looking at turkey recipes for the last three weeks, she’s determined to cook the turkey this year.

“It’s been pretty great watching her get a little bit better every week.”

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 — which takes about an hour to administer — 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.

“They had told us (she would be discharged) Wednesday (Dec. 13), and then Wednesday came and they said, ‘No you can’t go. Your breathing is not good enough yet, maybe we’ll look at Friday or Saturday,’” Jennifer told the Langley Times last week.

“And then she called me yesterday (Dec. 14) — I was at my staff luncheon — and said, ‘I’m going. They’re discharging me, I’m going home.’

“I was like, ‘What?’ So yeah, we had no idea.”

To make the holidays even better, Jennifer has her own homecoming to celebrate.

As she coped with Shantee’s medical battle, Jennifer also had to deal with another emergency at her house in Langley. Shortly before Shantee became ill, her neighbour’s hot water tank exploded and flooded her home. Jennifer and Jonathan spent the last couple of months in a furnished apartment in Langley 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.

“I don’t 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,” Jennifer said.

READ MORE: Langley teen seeks funding for $750,000 drug Soliris

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’s disease.

READ MORE: Six-year-old boy needs $19,000 a month to treat rare form of arthritis

“How things work behind the scenes was really surprising. And knowing there’s 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’s really, it was shocking to me,” Jennifer said.

“There’s 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.”



miranda@langleytimes.com

Like us on Facebook and follow us on Twitter

Just Posted

North Island Midget Eagles get their feet wet against Alberni Valley Bulldogs

The North Island Midget Eagles travelled down island to face off against the Bulldogs.

Council agrees to purchase emergency generator for Civic Centre

The loan will have to be repaid within five years, with no rights of renewal.

Candidates illuminate different visions of Port Alice’s future

The candidates were asked if they believed the pulp mill could run again.

VIDEO: Terry Fox Run returns to Port Hardy for the first time since 2016

All told, Port Hardy’s Terry Fox Run raised $2,200.30 with more still coming in.

2019 FEDERAL ELECTION: Meet the candidates for the North Island-Powell River riding

In an effort to inform the North Island-Powell River riding constituents, we… Continue reading

‘I shouldn’t have done it,’ Trudeau says of brownface photo

Trudeau says he also wore makeup while performing a version of a Harry Belafonte song

35 of 87 dogs in 2018 Williams Lake seizure were euthanized due to behavioural issues, BCSPCA confirm

The dogs did not respond to the behaviour modification and remained terrified of humans

B.C. ‘tent city’ disputes spark call for local government autonomy

UBCM backs Maple Ridge after province overrules city

B.C. drug dealers arrested after traffic stop near Banff turns into helicopter pursuit

Antonio Nolasco-Padia, 23, and Dina Anthony, 55, both well-known to Chilliwack law enforcement

B.C. MLA calls on province to restrict vaping as first related illness appears in Canada

Todd Stone, Liberal MLA for Kamloops-South Thompson, introduced an anti-vaping bill in April

Chilliwack woman wins right to medically assisted death after three-year court battle

Julia Lamb has been the lead plaintiff in a legal battle to ease restrictions on Canada’s assisted dying laws

B.C. bus crash survivor petitions feds to fix road where classmates died

UVic student’s petition well over halfway to 5k signature goal

Most Read