Landen’s Fight for Canakinumab

Jillian Lanthier is organizing this fundraiser.

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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