A fundraising initiative has been set up to help Mirjana Komljenovic, who has been diagnosed with Hermansky Pudlak Syndome and requires $2,000 a month to cover the costs of her medication. (gofundme.com)

A fundraising initiative has been set up to help Mirjana Komljenovic, who has been diagnosed with Hermansky Pudlak Syndome and requires $2,000 a month to cover the costs of her medication. (gofundme.com)

Fundraiser created to help Summerland woman with rare condition

Mirjana Komljenovic requires costly medication to treat Hermansky Pudlak Syndome

Friends have set up a GoFundMe to help a Summerland woman purchase the medication she needs for a rare disorder.

Earlier this year, Mirjana Komljenovic was diagnosed with Hermansky Pudlak Syndrome, a form of pulmonary fibrosis.

This is a lung disease that occurs when lung tissue becomes damaged and scarred.

“It’s a disease without a cure,” Komljenovic said in a blog post earlier. “It is the means to the end of a life. It is progressive, cruel and it takes my breath away. In fact, it takes away the breath of anyone afflicted.”

Life expectancy is between four and 10 years after diagnosis.

Komljenovic has been approved for Ofev, a medication to slow the progression of the disease.

READ ALSO: Komljenovic receives award from Disability Alliance of British Columbia

READ ALSO: Komljenovic nominated for national service award

The cost of this medication is $4,000 a month, and she is covered for half this amount.

The fundraiser is to raise $48,000, to cover the costs of the medication for two years.

Yolanda Lindal and Jill Fai organized the fundraiser.

“Mirjana has spent her life advocating for others, so I feel the need to advocate for her. She is a remarkable, amazing woman deserving the right to extend her life in any way fit,” Lindal said.

Komljenovic has been involved with NeighbourLink Summerland, Agur Lake Camp and other community initiatives over the years.

In 2018, she received the Citizen/Volunteer of the Year Award at the Summerland Business and Community Excellence Awards.

She has twice been nominated in the social change category in the RBC Canadian Women Entrepreneur Awards, back in 2017 and 2018.

In 2018, Komljenovic also received the Disability Alliance of British Columbia’s Employee of the Year Award.

Komljenovic was born with albinism and has limited vision. As a result, she has had to use adaptive technology to work.

She said the show of support through the fundraising initiative has been appreciated.

“When you’re hardwired to give, receiving is difficult,” she said.

She added that the medication is necessary, and the sooner she can begin using it, the better her outcome with the diagnosis.

The fundraiser has already generated more than $6,600.

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