Family races against time to obtain miracle drug for their infant daughter
Update: Thanks to an anonymous donor, the fundraiser was successful!
As Eliana Cohen reaches her second birthday it could be a tragedy instead of a celebration. Diagnosed with a rare condition, the drug that could correct her illness must be administered before the age of two.
SMA type two is a rare genetic condition that prevents Eliana from being able to stand or walk. The medication would help ensure that she’ll be able to breathe, eat and sit up on her own.
The drug Eliana needs is called Zolgensma. It is the most expensive drug in the world at approximately $2.2M for the single dose treatment. Zolgensma would create the missing gene that Eliana needs but it needs to be administered quickly.
The FDA approval in May 2019 didn’t help the Florida family’s unsuccessful attempt to have Eliana’s medication covered by their medical insurance and they are now in a race against time to crowdfund the money needed to pay for her treatment.
Over half a million dollars has been raised in three days but there is still a long way to go. On July 18, 2018 Eliana will no longer be able to obtain treatment. The verified fundraising campaign can be found at Save Eliana on The Chesed Fund, a commission-free fundraising site.
The Post Millennial has verified the details of Eliana’s condition and the battle to either obtain insurance coverage or extend the age condition that would prevent her access to the medication after her quickly approaching birthday. The court proceedings and appeals have ultimately just cost valuable time, leaving her parents with only a few days remaining to raise the money.
A doctor has been secured to administer the injection but the pharmaceutical company won’t send the drug until they have the full payment. The family’s insurance will cover the procedure and the doctor but not the cost of the drug itself.
Part of the crisis stems from a misdiagnosis when Eliana was a year old. She’s been in physiotherapy while the family struggled to get her true condition confirmed and corrected. The SMA2 diagnosis arrived on June 7, 2019, just over a month ago, and the race against time began.
On July 20, 2019 Eliana will turn two years old. People donating to her campaign are hoping to change her life but the clock is ticking and weeks have been lost hoping the appeal courts would solve their problem. Not every child has the opportunity to obtain a “miracle drug” but in this case Eliana needs a miracle to obtain the drug we know can help her.
To donate to Eliana visit the Save Eliana Chesed Fund and share the link.
A resident of Kitchener, Ontario is having a nightmare of a situation. What was supposed to be a nice vacation with his wife has turned into the kind of story only an insurance company could print, finely. Now he’s stuck in Thailand with a fatal brain tumour.
Alex Witmer and his wife Jennifer Witmer had been living in Moncton for the last five years before quitting their job and travelling to Thailand for a six-week excursion. The plan was to return home and relocate to Toronto. Alex, 30, unfortunately, began suffering from a migraine.
“He got a migraine that didn’t go away,” Jennifer Witmer told CTV News Toronto from a hospital in the southern Thailand.
Jennifer Witmer was expecting to acquire some pain medication for the migraine however a brain scan revealed that is was a “massive tumour deep inside his brain” that was cancerous.
“My husband was extremely healthy, he was an international athlete. He has never had any issues,” said Jennifer.
Alex Witmer was given medication to reduce the pressure inside his brain that was causing the headache but was told that it was only a temporary solution. Doctors told him he needs immediate brain surgery, chemotherapy and radiation.
Alex was told furthermore that the medication they gave him would only work for a couple of days and it was in that window of time that he best fly back to Canada.
“We have travel insurance, so we opened a claim and there was no issue we just got the go-ahead yesterday. They were sending an air ambulance,” Jennifer told CTV news.
“A few hours later they called back and said they received his medical records and it showed he checked into an emergency room in Moncton a month ago and had symptoms of the flu. He reported a mild headache and because he said that they cancelled our claim based off having a pre-existing condition.”
“They offered to still send an air ambulance service and quoted me $265,000 but that’s obviously not an option.”
“We are right now waiting for them to call and give the final word on our claim but they have been telling me it doesn’t look good.”
“It’s just cruel. Our neurosurgeon here said his flu symptoms are not pre-existing conditions. It’s insane they are flagging this.”
A GoFundMe page has been organized to help raise funds for Alex Witmer’s care and has received more than $10,000 in six hours.
Ryan Straschnitzki, a 20-year-old hockey player who was involved in the Humboldt Broncos bus crash is home after undergoing surgery in Thailand. Straschnitzki was paralyzed when the team bus hit a westbound semi-trailer truck on April 6, 2018. 16 people on the bus were killed due to the awful accident.
On Sunday night, Straschnitzki made his way into the Calgary airport from Thailand. He told Global News, “It feels good. I mean I felt that cold, cold wind hit my legs, so I’m feeling good. It’s good to be back.”
Straschnitzki was paralyzed from the chest down in the accident and had to have an epidural stimulator inserted into his spine along with having stem cells injected.
Straschnitzki is quoted saying, “It was incredible. I mean the last time I walked beside my dad was before the accident and before I moved away. So doing that again and just seeing the look in his eyes is motivating to me.”
His father, Tom, said, “When I actually saw him move his leg, it just took me back to imagining his last steps going onto that bus on that fateful day. And I was just thinking maybe he can go back on the bus one day.”
The surgery that Straschnitzki required is not yet approved by Health Canada, or covered by public insurance, so it can cost close to $100,000. Because of this, Straschnitzki and his family had to make the trip to Thailand, unhappy with the Canadian health-care system.
“Our health-care system is kind of lacking in this area for spinal cord injuries and I think it’s huge that Thailand and some other places are getting this started.” Said Straschnitzki hoping to help get the ball rolling on the issue.
Licenced Spinal Cord stimulators are given by Health Canada but are just for pain relief and not for the recovery of motor skills.
“Just getting that feeling of being able to move something that I wasn’t able to move before, and I know core is a huge part of my disability, so anything below my chest is crucial. And after the programming it really helped,” said Straschnitzki.
He is planning to take some time to rest before getting back to the ice and physiotherapy. Straschnitzki is also optimistic about making the Canadian Olympic team for sledge hockey in the future.
US President Donald Trump’s official Facebook page shared a post commending him for the American job numbers for November, while calling out Prime Minister Justin Trudeau and the abysmal job numbers in Canada, the worst since the 2008 financial crisis.
“Let’s see. President Trump is fighting for America and our economy [sic] just ADDED 266,000 jobs,” starts the post from a Trump supporter shared by the POTUS on Facebook.
“Justin Trudeau was laughing it up in London and the Canadian economy just LOST 71,200 jobs. That’s no joke. Trump wins. Again,” the post ends, referring to Trudeau being caught on a hot mic earlier in the week making fun of Trump to other world leaders when at the NATO anniversary gathering.
Trump responded by calling Trudeau “two-faced” and that the PM didn’t like him calling out Canada as “delinquent” in its defence spending. The US President was also caught on a hot mic when leaving the London saying it was “funny when I said that guy was two-faced.”
On Friday news broke that Canada had lost over 72,000 jobs in the month of November, many Canadians losing their jobs just before the holiday season. The job loss was the biggest in Canada since the 2008 financial crisis.
Trump has been boasting throughout the day about the great jobs report in America and appears to have not forgotten Trudeau talking about him behind his back in London.
Trudeau hasn’t likewise addressed the Canadian jobs report on social media.
Many political experts have said that Trudeau being caught laughing behind Trump’s back could have untold consequences for Canada relationship with the US, especially if Trump is reelected in 2020.
Since the Trump Administration was inaugurated, the Trudeau Liberal Government has shown a repeated tone of arrogance and superiority towards our American allies.
Whether it was Trudeau and Freeland giving virtue-signalling speeches that were thinly-veiled swipes at the US, lecturing the US on social issues, or Trudeau’s latest debacle at the NATO summit, it’s been clear that the Trudeau Liberals have no respect for America.
Yet, at the very same time, the Trudeau Liberals show far more respect towards Communist China, no matter how badly that nation treats Canada.
Consider the fact that—whatever disagreements Trudeau and Trump may have—the US is still available to talk and discuss issues with our country, and is a democratic nation governed by the rule of law.
By contrast, Trudeau and Freeland often can’t even get China to answer their phone calls.
Canada and America are part of the same inheritance of Western Civilization, and our history and future are inextricably linked.
Meanwhile, Canada’s values and the values of China’s Communist government are clearly incompatible, as the suppression of freedom, forced organ harvesting, denial of religious rights, execution of political dissidents, and horrifying surveillance state all makes clear.
And while Canada and the US have disputes like any two nations do, the fact remains that China has treated us far worse than the US ever has. China is illegally detaining two Canadian Citizens, has spoken in arrogant and threatening tones towards our nation, and is clearly an ideological and strategic adversary.
Additionally, the vast majority of our foreign trade is with the US, and given our amazingly weak defence spending, the US is basically the only armed force that is defending North America (and by extension defending the Canadian People) at the present time.
All of this should be the basic groundwork for how any Canadian Leader thinks about the United States. And it should go without saying that a Canadian Leader should always be more respectful towards the US than towards Communist China.
But with Trudeau, we see the opposite.
He’s never laughed about Xi Jinping.
He’s never mocked Xi Jinping.
He hasn’t even lectured China on their concentration camps with as much force as he lectured the US about abortion.
In short, Trudeau has shown far more respect to Communist China than he has towards the United States, a clear sign that his value-system and worldview is severely messed up.
Trudeau appears to be in thrall to the view of the radical far-left which blames the Western world for everything, admires brutal communist states, and seeks to weaken their own nation and our Western allies in order to strengthen foreign nations out of some insane sense of “historical guilt.”
Now, with Trudeau’s screwed up mindset governing the nation, our country is increasingly distanced from our closest ally, putting all of Canada at risk in an increasingly dangerous world.