A Story of Love, Strength and Hope
By Michalis Kouziakis
Let me begin by introducing myself. My name is Michalis Kouziakis. I am from Kozani, husband to Paschalia and father of three children, Vasiliki, Sebastian and Maria. I am also a co-founder of the association “Heroes of BPAN.”
BPAN is an extremely rare genetic disorder caused by damage to one of the approximately 20,000 genes in human DNA. To date, around 500 cases have been diagnosed worldwide, and only two in Greece.
The first symptoms include delays in motor and cognitive development, difficulty walking and speaking, and the loss of developmental milestones. These were the signs we observed for months in Maria, until her hospitalization and the difficult diagnosis finally came.
There is, however, something Maria never lost, her smile. And that deep, expressive gaze that seems to tell us not to ignore her, to help her, to keep her close to us.
The association “Heroes of BPAN” was born as a natural continuation of our decision not to let the disease take Maria away from us. A decisive role was played by our meeting with Nadia Tziola, mother of Alexandra, who had already begun fighting with determination, organizing initiatives and building connections with other parents and doctors. The idea to establish the association was hers.
The association’s mission is to raise public awareness and support scientific research through fundraising initiatives. We began with a few events organized by others on our behalf. Gradually, more people learned about us and supported our effort.
Our greatest challenge is time. A day has only 24 hours, which must be shared between work, family life and the association’s activities. Yet people stood beside us. Most understood our situation and supported us with genuine care and love.
Through this journey came the idea for a special concert, an event of love and hope that can unite our local community, our country and Greeks around the world. Hymns of Hope presents some of the most beautiful and devotional Easter hymns, arranged for symphony orchestra and choir in a way that respects their original meaning.
We know we still have a long road ahead of us and we are determined to continue, for our little girls, Maria and Alexandra, and for all the children living with this condition. The more people stand with us, the closer we come to making a difference.
More information about the association:
https://bpanheroes.gr/
The stories of Alexandra and Maria:
https://bpanheroes.gr/home/stories/
Follow our actions on Facebook:
https://www.facebook.com/@bpanheroes
Concert: Hymns of Hope
April 5, 2026
9:00 PM
The concert will take place in Kozani.
It will also be broadcast via Facebook Live, so anyone, anywhere in the world can watch it free of charge.
It would be a great joy for us if you could join us, either in person or online.
Sharing this initiative helps raise awareness and strengthens the effort to support children living with BPAN. We believe the Greek diaspora community can play an important role in this journey.
Event details:
https://fb.me/e/7L9wDxvuN
