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🇹🇼 Taiwan /Health & Science

Mother of boy with rare disease continues fundraising: 'I can't leave others now'

From Liberty Times · () Chinese

Translated from Chinese, summarized and contextualized by DistantNews.

At a glance

Interview Sources not specified Context piece
  • Alicja Orlik, mother of a child with Duchenne muscular dystrophy (DMD), continues fundraising efforts despite her son Adaś receiving treatment funded by the Łatwogang foundation.
  • Orlik feels compelled to help other families facing similar struggles, recalling her own past experiences with fundraising.
  • She expressed mixed emotions, including frustration and envy, when seeing other successful fundraisers, but emphasizes the importance of perspective and gratitude for the help received.

Alicja Orlik, whose son Adaś is undergoing treatment for Duchenne muscular dystrophy (DMD) funded by the Łatwogang foundation, continues her advocacy and support for other families facing the disease.

I know I don't have to, but I have a strong feeling that I can't leave others now.

— Alicja OrlikOrlik explained her continued involvement in fundraising efforts despite her son's treatment being secured.

Despite securing the necessary funds for Adaś's therapy, Orlik feels a strong obligation to assist other parents navigating the arduous process of fundraising. "I know I don't have to, but I have a strong feeling that I can't leave others now," she stated. She empathizes deeply with their emotional turmoil, drawing from her own past experiences.

Orlik shared candidly about the complex emotions she felt when witnessing other successful fundraisers, particularly those that concluded quickly or were promoted by public figures. "Anger, regret, jealousy? All at once," she admitted. She reflected on moments of questioning why she hadn't thought of similar strategies, but stressed the importance of moving beyond self-centered perspectives to recognize the widespread support they have received.

Anger, regret, jealousy? All at once.

— Alicja OrlikOrlik described her complex emotions upon observing other successful fundraising campaigns for children with DMD.

Her journey has been marked by both challenges and triumphs. The news that Łatwogang was organizing a fundraiser for another child with DMD brought immense joy and hope, signaling a greater awareness for the disease. When Łatwogang subsequently selected Adaś for their support, Orlik described it as a "shock" followed by overwhelming happiness. She recounted the moment she received the news, initially thinking it was a mistake, before realizing the magnitude of the support her son would receive.

It was a shock. Great joy. I knew it was very important that Łatwogang noticed DMD, because we all knew as parents what it meant: we would finally start talking about us.

— Alicja OrlikOrlik reacted to the news that the Łatwogang foundation was organizing a fundraiser for a child with DMD.

Orlik recounted traveling to Gdańsk with Adaś after the fundraising success. She explained to her son that a man named Piotrek had undertaken an extraordinary cycling journey to raise funds, and that everyone was celebrating and traveling to meet him, so they would too. This narrative framed the event for Adaś, emphasizing the collective effort and joy surrounding his treatment.

I thought it was a mistake, probably a misunderstanding. I entered the link, and there it was - our Adaś.

— Alicja OrlikOrlik described her initial reaction upon learning that her son Adaś had been selected to receive support from Łatwogang.
DistantNews Editorial

Originally published by Liberty Times in Chinese. Translated, summarized, and contextualized by our editorial team with added local perspective. Read our editorial standards.

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