W jakim wieku zostałeś zdiagnozowany?
9

Jakie jest twoje największe osiągnięcie?
My greatest accomplishment is continuing to live an active and meaningful life despite LGMD. I’m building strong relationships, adapting to challenges, and maintaining my sense of purpose and humor through it all.

Jakie były pierwsze objawy?
My body was always hurting

Jak LGMD wpłynęło na to, że stałeś się osobą, którą jesteś dzisiaj?
LGMD has made me more patient, resilient, and appreciative of the small victories in life. It’s taught me to problem solve daily, advocate for myself, and value the people who truly show up and support me.

Czy masz innych członków rodziny cierpiących na LGMD?
Nie

Co chciałbyś, aby świat dowiedział się o LGMD?
I want the world to understand that LGMD is often invisible at first, but it deeply impacts strength, mobility, and energy. People with LGMD are still capable, driven, and full of life. They just navigate the world differently and deserve accessibility, respect, and understanding.

Co uważasz za największe wyzwanie w życiu z LGMD?
The greatest challenges are the gradual loss of strength and independence, and adapting to changes in mobility over time. Everyday tasks that used to be simple now require planning, support, or adaptive equipment. There’s also the emotional side of learning to adjust while still trying to live fully and not let the condition define everything.

Gdyby jutro można było "wyleczyć" chorobę LGMD, co byłoby pierwszą rzeczą, którą chciałbyś zrobić?
I would want to experience freedom of movement again. Walk, travel more easily, and do everyday things without needing to think about limitations or fatigue. I would pick my son up and carry him. Be a “normal” dad.