Special Survivor

Can you imagine, how it would feel if your child would be born with a difficult disability, but without a clear diagnose?

Heli Mustonen’s daughter Hanna got the diagnose 2017 when her daughter was already over 20 years old. For Mustonen as a mother, the diagnose was a relief. Hanna’s disability is just a coincidence and it is not hereditary. ZTTK-syndrome was discovered just in 2016 and Hanna is the only one in Finland with the diagnose. In the United States, only less than 30 people have had this same ZTTK-diagnose. Mustonen has felt, that she has not found peer support for herself (Rask, 2017).

When Hanna was born, Mustonen was a single mother. She felt depressed and sorrowful. Mustonen speaks in the article about her feelings of letting her relatives down, because of her child’s condition. Mustonen also mentions, how some of her colleagues blamed her to be a “burden” in their workplace because her child was so often sick. When Hanna was 9-years old, Mustonen found a new spouse. Mustonen says, that without her spouse she would not have survived. In 2017, Hanna moved to a care home that is targeted to people who are severely disabled. Hanna has settled down well and Mustonen and her spouse can visit her often (Rask, 2017).

Mustonen and her spouse have now signed up as support persons for those families, who might get ZTTK-syndrome diagnose. In Finland, Norio-keskus is specialized in rare and hereditary diseases, disabilities and syndromes. Harvinaiset-verkosto also provides information and support. Mustonen has resigned from her long-time workplace and she is focusing on poetry and restoring old purses (Rask, 2017).

Mother and daughter. Picture by Heli Mustonen. https://yle.fi/aihe/artikkeli/2017/11/24/hannan-vaikea-kehitysvamma-pysyi-arvoituksena-25-vuotta-diagnoosi-paljasti-etta

Although Mustonen has now more time for herself, she says that the greatest joy she gets from her daughter Hanna. She feels that Hanna is a real survivor and she is so proud of her and her capabilities (Rask, 2017).

Mustonen and her daughter are not alone. Approximately 6 000- 8 000 rare diseases are recognized all over the world, and the numbers are growing. In Finland, approximately 300 000 people are having rare diseases, disabilities and syndromes (Harvinaiset-verkosto, 2018). Hanna’s story is special and important. Maybe with the help of Hanna’s story, someone could get the relieving diagnose earlier.

Rask, R. 2017. Hannan vaikea kehitysvamma pysyi arvoituksena 25 vuotta – diagnoosi paljasti, että hän on ainut laatuaan Suomessa. YLE article, 24.11.2017. Accessed 29 November 2019. https://yle.fi/aihe/artikkeli/2017/11/24/hannan-vaikea-kehitysvamma-pysyi-arvoituksena-25-vuotta-diagnoosi-paljasti-etta

Harvinaiset-verkosto https://harvinaiset.fi

Norio-keskus https://www.norio-keskus.fi/etusivu.html

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3 ajatusta aiheesta “Special Survivor”

  1. I really liked reading your blog post about this rare condition and about how it also affects the people close to the person with the disability. I can only imagine how difficult it is to raise a child with disability and not having a clear diagnosis of their condition. Thank you for sharing this. 🙂