A che età è stata fatta la diagnosi?
9

Qual è il suo più grande risultato?
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.

Quali sono stati i primi sintomi?
My body was always hurting

In che modo la LGMD l'ha influenzata nel diventare la persona che è oggi?
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.

Ha altri familiari affetti da LGMD?
No

Cosa vuole che il mondo sappia della 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.

Quali sono, secondo lei, le sfide più grandi da affrontare nella convivenza con la 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.

Se la vostra LGMD potesse essere "curata" domani, quale sarebbe la prima cosa che vorreste fare?
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.