The Largest Gene and Presian

The Largest Gene and Presian Our son Presian was diagnosed with DMD on 09/06/2022. We hope to raise awareness and celebrate his achievements. Together, we are stronger.

This page shares the day-to-day life, challenges, and victories of him living with a muscle-wasting condition.

The first blood test after starting - hopefully the results will be ok. The nurses at RUH were great.
29/04/2026

The first blood test after starting - hopefully the results will be ok. The nurses at RUH were great.

21/04/2026
The amount of medication needed for Presian to delay the progress of Duchenne and to keep well. He started taking Givino...
21/04/2026

The amount of medication needed for Presian to delay the progress of Duchenne and to keep well. He started taking Givinostat last week, as part of Early Access Programme, which we are thankful for. It's a lot (morning and evening now) and the pile will only get bigger with time (plus machines in the future). He's taking it all with no complaints despite the bad tasting liquids. And will have many blood tests in the following weeks to monitor how he is doing on the new medication. Our special boy. đź’™

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