This website and It’s Rare For Me project is organised and funded by Chiesi Global Rare Diseases
This website and It’s Rare For Me project is organised and funded by Chiesi Global Rare Diseases
This website and It’s Rare For Me project is organised and funded by Chiesi Global Rare Diseases
My son has grown enough
Ria
Herkenrode,
Belgium
In certain moments and clinical conditions, it feels like there is no hope. More than 15 years after the diagnosis of a rare inherited lysosomal storage disorder called Fabry disease, with a very complicated clinical situation, Ria looks at her life with a different perspective. Her children and grandchildren restored that sense of hope that felt she had lost.
This is what she told us when we met her in Herkenrode, Belgium: being aware of your own condition, well informed and assisted by associations is perhaps not enough to heal, but it is enough to look at the present and to the future with the right perspective, feeling part of the common path of life to which we all belong.
We met Ria in Belgium, in a typical abbey, that gifted us with the very particular light we can see in her portrait. She told us her story and the admiration we felt for her was so strong that, when I took her portrait while she held the photo of her son, we were all moved to tears.