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Landen’s Fight for Canakinumab

$16,735 of $57,150 goal

Raised by 268 people in 19 months
Everyone, meet Landen! He is a sweet 6yr old boy and recently, in June 2017 diagnosed with a rare disease at Victoria General Hospital.

We are residents of Sooke BC, and are up against the B.C. government fighting for approval of a VERY expensive drug called canakinumab

Canakinumab comes with a price tag of $19,050.00 per MONTH.
$228,000 per YEAR.

I will post my open letter to Premier John Horgan below as it explains our situation from the beginning to currently.

I have sent a similar letter to Justin Trudeau & Adrian Dix, health minister of BC as well.

Also, please take a minute and sign this online petition, to fund canakinumab.

https://www.change.org/p/adrian-dix-bc-minister-of-health-fund-canakinumab-therapy-for-the-british-columbia-children-who-urgently-need-it

***IF we get approval from the BC Government for canakinumab, I will donate these funds raised to Victoria General Hospital Paedeatric “Child Life” department who plays a large role in Landen’s life, and ongoing hospital stays.****



Dear John Horgan,

I am a single mom of 4, college student, and I live in Sooke BC - your hometown!

I have never asked for help, and truthfully never needed it like I do now, and still I hate this.

Please let me explain our devastating situation we have been faced with
(I’ll do my best to keep it short).

I have a sweet little boy, his name is Landen and he is almost 7. He attends (when he can) Sooke Elementary.

This past spring, Landen rolled his ankle at a fundraising school event. A quick trip to emerg, we were told nothing serious, just a sprained ankle. If it didn’t improve; we should return.

I’ve been a mom for 13years. A sprained ankle was minor to me. We carried on our usual life and some Tylenol “fixed him” ... or so I thought.....

I’d love to tell you that it was weeks, or months and nothing came from that “sprained ankle” ... but unfortunately it was only 3 days before our entire world shattered faster then I could imagine. The rug was pulled from underneath us in a blink of an eye.

Landen was rushed to Victoria General Hospital on June 1 2017 with:

a fever of 103, body tremors
unable to move limbs.
Unable to walk.
Unknown full body rash

He was admitted to acute emerg right away, and for the following TEN days - we had no answers. None. Zero. Zilch.

They talked about leukaemia, lymphoma, toxic blood, blood infection, the list goes in. I look back and don’t know how we survived those days - They were desperate for answers like I was.

I met with every specialist I could have imagined, but still no answers. Landens chart was also sent to BCCH for consult.

I am certain Landen went thru millions of dollars in testing for those 10 days, and still - the doctors had no answers, I am forever grateful for those team of doctors, forever thankful. VGH has been amazing, as well as BCCH.

Watching my son suffer, be immobile and require the use of a paediatric walker was nothing short of devastating.

This was the boy, who could race a BMX faster then his dad, and in a blink of an eye, lost all capability to do so, let alone walk or use the washroom.

**Landen was diagnosed June 14th 2017 with Systemic Juvinelle Idiopathic Arthrits** (SJIA)

Landen now requires a medication called Canakinumab.

Cost per MONTH: $19,000
Cost per YEAR $228,000

MSP (pharmacare) has denied my child who is suffering this medication.

MSP (pharmacare) special authority has further denied my son this medication thru his specialist.

We, HAVE tried the “cheaper” drug since June 2017, and are at the point it’s no longer working as effectively and there is NO other option that is cheaper. Nothing.

We are in hospital several times per month. Our life is now planned around the hospital schedule. I wish that for nobody - let alone a child, who I feel was robbed by this disease.

I understand most people assume “sore joints” when told “Arthritis”.
I was one of those people. I truly thought “what’s the big deal”.

I learnt the hard way. The very hard, unimaginable way.

It’s a lifelong critical illness, less then 6 months ago, a little boy passed away from SJIA at BC Children’s hospital.

Mr Horgan, this disease attacks itself, wreaking havoc on my son.

It has a fatal side diagnosis called MAS. Macrophaga Activation Syndrome. That word in itself, is my next largest fear as it could kill my son Landen.

Mr Horgan, this disease is life threatening, and very rare.

Mr Horgan, There is NO cure.

Remission is possible, but no medical professional can tell us “if or when”.

Mr Horgan, this disease leaves my child with no immune system - making it potentially fatal from something as simple as a cold.

ANY illness Landen catches, he is admitted immediately on route to the hospital from Sooke.

I have never in my life written any sort of letter like this, but I am reaching a new level of desperation.

I simply don’t have $19,000 per month for medication, but please tell me; what Canadian does?

I also, never imagined in Canada I would be fighting for a drug this expensive.

And Mr Horgan, To make matters 100% worse, the packaging of this medication makes only HALF a useable dosage for Landen, and requires the other HALF, to be thrown in the garbage because the dose is simply too much. (I wish I was joking) it seems so cruel, and fraudulent. But you read correctly.

- 150mg Vial.
- Landen only requires 75mg vial.

I hope this letter reaches you, as I continue to write letters, reach out to the media, the press, social media, friends, strangers, & Facebook, simply out of desperation to see my sons life stabilize.

I am nearly begging, please help.


Sincerely, a heartbroken mother.

Jillian Lanthier


https://en.m.wikipedia.org/wiki/Canakinumab

http://www.ilaris.com/index.jsp?usertrack.filter_applied=true&NovaId=4029462223568432244



https://www.facebook.com/SookePocketNews/posts/959475170870723


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Wow! Where to start ... long post ahead!

The media has died down, and life has returned to being quieter.

Opening our life to the world was overwhelming, and challenging to accept but amazing all at once.

I don’t know where we’d be in Landen’s journey if it wasn’t for all of you cheering us on, and rooting for my sweet guy Landen.

Strangers, friends, communities, everyone; leaves me in without words.

It Leaves me laying awake at night knowing good people exist everywhere, and it Leaves me knowing so many of you wonderful strangers have Landen’s back, unconditionally.

THANK YOU. I honestly feel like I cannot say this enough. xo.



Financial update: our goal was set to $57,000 (3 months of treatment and I am ecstatic to say we are close !!)

In Landen’s trust account at Coast capital sits Approximately $25,000-$27,000 - guys !!
That is half !!!

A large portion of that was from Landen’s benefit concert & carnival, with the remaining being from donations, a second concert, silent auction, and a metal bin in sooke, thank you Steve, and not to mention the anon donations made.

Landen’s GoFundMe is sitting at $15,940.

And both continue to grow ... !!

DRUG UPDATE:

As for the drug Canakinumab, as much as I’d like to run to shoppers and fill the prescription; it is not that easy, for a handful of reasons beyond my reach.

I am STILL working behind the scenes with Novartis Novartis Pharmaceuticals Corporation in hopes of a compassionate trial allowing for more treatment.

So it may seem like nothing is happening & the money is sitting there safely in a bank account, but things are moving, just slowly.

In this nightmare, I have learnt things take more time then I anticipated.

MEDICAL UPDATE:

As for any new medical team decisions; Landen will meet the head rheumatologist at B.C. Children’s this Thursday.

I wanted, still want, and continue to daydream about remission.

About life before this took over, and how much I want my healthy child back, that being said; we are not that lucky.

We have had bouts in the last 8 weeks where I’m like “YEAH HE IS GOOD, THIS IS REMISSION” only to follow with crippling pain, loss of movement in his neck, frozen knee caps, and sore ankles that make him unable to walk.

And then reality hits me. Every single time.
Never fails.

Landen still continues to receive his IV treatment at VGH on the days his veins want to co-operate.

A port in Landen’s chest is still off the table as a “fix”.

And as of this evening, I discovered Landen May have a side affect of This awful disease - called “Uveitis”. (I can’t describe it too well, I just know it’s part of this horrendous disease)

Landen will see an ophthalmologist fairly soon, and again, this will be discussed at BCCH on Thursday.

GOVT UPDATE:

We will most definitely re apply to the B.C. government, and Pharmacare, But the thought of dealing with the woman in charge of Special Authority makes me cringe.

AND while on the topic of the B.C. Government, I am still pushing, for an MLA meeting with John Horgan who has continually avoided Landen’s case on every single account, email after email. As Landen’s MLA and the premier of British Columbia.

John Horgan can be reached at:

john.horgan.mla@leg.bc.ca

I hope this offers an update that you were all hoping for I will post another update on Thursday after our BCCH appointment !

Love,
Landen & Jill.
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Do you ever become mentally exhausted? Unable to reply to messages, or call people back. This has become me, if you knew me before Landen’s diagnosis; I’m sorry, so terribly sorry I’ve changed to the friend who seems uninterested or “not” present. I am, but my soul is tired. So endlessly exhausted.

And after today, I think Landen is reaching this same point. Except; he’s a little boy who doesn’t understand; so in the moments of sedation, he fills with anger.

We spent well over 3 hours waiting. Waiting for an individual confident enough to start his IV.

We heard “we failed him 4x our last visit, get some new eyes” from the top people today.

“We could call it a day and you can come back?”

Deflating, when you are trying you’re damn best.

I was told today a “port” is not an option because of the disease Landen has. (This was last resort for Landen in my mind, but is now not even ... a resort).

Today; I got the 2 steps forward, 3 huge steps back feeling, and I just can’t shake it....

We are awaiting a trip to BC Children’s in the coming weeks.

Landen and I will also be travelling to the USA April 10th -13th 2018 to have Landen assessed by a top Paedeatric rheumatologist in Minneapolis.

Thank you for following us, and cheering us on to not give up. We are grateful.

Love,
Landen & Mom.
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If you are local to Victoria BC or Vancouver island, Axe & Barrel is hosting a Burger and Beer fundraiser on March 18th $25/ticket. Contact Axe & Barrel for tickets, thank you for all your continued love and support thru this journey.
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Until June 2017, I foolishly believed we were invincible, that no child of mine would ever become sick with an irreversible disease, of any sort. Nothing.

We were healthy.

We were good. Better than good.
And, we were HAPPY. ❤️

Turns out, happiness doesn’t shield you from the unthinkable.

Please, if you’re reading this - and think “oh that’ll never be our case” do yourself and your family a favour.

Life insurance.
Critical Illness insurance.

Don’t wait. Make the call tomorrow.
Do it !!

When the unthinkable happens - your world comes crashing down faster then you ever imagined.

Not one day at a time, it happens in lightening speed and all your hard work as a parent is pulled out from under you “in-the-blink-of-an-eye”.

Seriously; lightening speed. ⚡️⚡️

I have spent months over analyzing life’s little moments, and big milestones of Landen’s life and criticized myself for the what if’s;

“could I have done this differently”
“If I had a chance to do it again, what would I change”.

Surely it was MY wrong doings as Landen’s mom.

What did I do that potentially caused this?
What could have I done to avoid this?

The questions, at times have consumed me.

And as the months stretch on, the answer is;
NOTHING.

I have to accept that truth.
There was and is still nothing I could have done.

I would have never known.
This was unavoidable.
The unthinkable happened
And, after 13 years as a mom turns out;

We’re not invincible.
Just strong.

Love,
Jillian & Landen
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Raised by 268 people in 19 months
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