Nearly 14 years ago, we made the best decision of our lives. We decided to move to Summerland.
On Nov. 5, The Summerland Review published a story about my health crisis. I have been diagnosed with a fatal disease, Pulmonary Fibrosis/Interstitial Lung Disease or PF/ILD.
The disease is a result of an exceedingly rare disorder named Hermansky Pudlak Syndrome or HPS which is a mutation from a genetic condition, albinism, which does not have an acronym.
I require awfully expensive medication to slow the progression of the pulmonary fibrosis.
Currently, the medication, Ofev, is not approved for PF/ILD therefore funding is not available.
Ofev costs $4000 a month. The story John Arendt concentrated on was about how so many have rallied on my behalf to start a campaign to raise money so I can begin the Ofev treatment.
Since the article was published, I have received tremendous support from my fellow Summerlanders.
Friends, colleagues, businesses, individuals I have never met, have been so generous with donations to “Mirjana’s Movement,” strangers have even dropped off donations to Maple Roch.
Professional healers have offered treatments to help slow the progression and even possibly reverse some of the scarring on my lungs. Holy Child Catholic Women’s League put together a baking fundraiser.
I know there will be more help to come.
With everyone’s support, I have started the treatment and while there have been a few side effects and adjustments, I am doing well. I believe I have all the love and support I need to live a life of quality for a long time.
I am overwhelmed and deeply touched by your generosity.
You have raised your sword to help me fight for my breath, and all of this during a global pandemic while you are coping and dealing with the many challenges of this year.
How does one express their gratitude for such kindness? How does one thank someone that has given the gift of life?
Summerland, I say to you with humility and gratitude, Merry Christmas. May your season be bright, may the New Year be gentle, and may you know the joy you have given.
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