Please help my child fight ITP and live a normal life!

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Please help my child fight ITP and live a normal life!

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Hello good people, my name is Nataliia, and I am desperately seeking your help! I am fundraising for my 10-year-old child Viktor. I am trying to fundraise money to cover Viktor's 6-month supply of his life saving medicine, which he needs urgently.

We are a family from Ukraine and arrived in Canada in 2022 when the war broke out in our home country. We started building our new life here in Canada, and met so many amazing, kind, and helpful people. Everything seemed to be great until June of 2024, when my boy Viktor was diagnosed with a severe case of Immune Thrombocytopenia - Immune thrombocytopenic purpura. Since then, our lives have been divided into "BEFORE" and "AFTER".



ITP is an autoimmune blood disorder characterized by extremely low platelet count, in which the body attacks and destroys its own platelets. When Viktor was first diagnosed, his platelet count was only 9, which is the lowest minimum in a child, and it should be 150. This blood disorder is really dangerous, as any injuries and traumas can cause severe bleeding, which can then be extremely hard to manage. When left untreated, ITP can cause serious complications, such as life-threatening heavy nosebleeds, brain hemorrhages and strokes, stomach and intestinal bleedings, retinal hemorrhages, which can result in blindness, and even death from severe blood loss.


First, doctors tried to prescribe hormonal treatment, such as Dexamethasone, but Viktor's immune system did not respond well to it. Therefore, Viktor was prescribed a drug called Apo-Eltrombopag. This drug is insanely expensive - the cost of the 28-day supply ( 75mg dosage per day) costs more than $5,600 (Canadian dollars) (see below, this is Viktor's most recent prescription refill).


Viktor reacted well to this treatment, and in about one month, his platelet count jumped from 9 to 34, and then to 55. He needs to continue taking these pills to be able to live a normal life and recover from his illness, and not suffer from constant bruising all over his body, a heavy nose, and wound bleeding, contrast trips to the ER, and platelet infusions.

First, Viktor's medication was covered by the Alberta Health Benefits available to all Ukrainian families residing in Alberta province. However, sadly, the government of Alberta terminated these benefits for all Ukrainians on March 31, 2025. All Ukrainians who are not permanent residents or Canadian citizens are not eligible, including us.


Since the termination of benefits, Viktor's medication was then covered by the hospital's compassionate program for 3 more months; however, now we need to find a way to purchase Eltrombopag at our own expense for at least another 6 months (or more, if the treatment needs to be continued for a longer period).

As sad as it is, no private/individual insurance will cover this medication due to yearly limits and high prescription costs, or will cover only a small portion. We even tried the Alberta Blue Cross non-group coverage managed by the government and asked for a generic drug called Revolade (same drug, just a different brand), and it's not a covered benefit, even with a special authorization.


We do not have any close friends or relatives here in Canada. And, unfortunately, my spouse cannot work at this time to help us out, as he's not doing well either. Earlier this year, he was diagnosed with an aggressive Medullary thyroid carcinoma and Pituitary gland macroadenoma in his brain. He's had two surgeries so far (with thyroid completely removed) and is scheduled for his brain surgery in October. Then, he will also need chemo or radiation therapy and a long recovery.

Given all the circumstances, I just cannot afford the cost of Viktor's medication to be paid out of pocket ATM. He is eligible for 9 more refills, which will cost us $50,000 for 9 months. I am trying to fundraise at least $35,000 to cover 6 months of his medication. I've already exhausted all my savings and resources while purchasing these meds, and really need a helping hand.

I am so heartbroken and so stressed out. I just have a feeling I am letting my kid down. Viktor is such an easy-going, cheerful, friendly, brave, and kind boy; he always tries to do his best to cheer me up and make me smile. Just like any other kid of his age, he is very active, and wants to play outside, run, jump, ride a scooter or bike, play soccer and basketball, and more. Unfortunately, Viktor is not able to do all that because of his condition, and because when he falls from the bike and injures himself, we have to rush him to the ER. Also, I myself developed a terrible fear of Viktor's head injuries, as even slight ones can result in internal brain bleeding, hematomas, and strokes.

Typically, as a mom of three boys, I do my best to solve all the issues on my own. I am so embarrassed to ask for help, but this time I just do not know what else to do, and asking you all for help. My life at this time reminds me of a rollercoaster. I am trying so hard and struggling so much, but it looks like all my efforts are in vain. Please help my child live the normal life of a 10-year-old boy he deserves! I just want him to be happy and healthy again!
I promise to pay it forward!

Organizer

Nataliia Moroz
Organizer
Edmonton, AB
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