Understanding
Okur-Chung Neurodevelopmental Syndrome
Rare Disease Day Reflection 2022
by Aurelie Froment
It’s now been 2 years that we went from being a ‘diagnostic-less’ family to the family of rare diseases. After 5 years of doctor hopping, and thanks to wonderful people met along the way (and a lot of tenacity), we finally were able to put a name on our son’s troubles.
This diagnosis changes nothing, and it changes everything. Today in 2022, while the future is still full of unknowns, we walk towards it much more serene and strong, and each day with Hélio is an encouragement. With our experience, with Hélio being so wonderful, strong and brave, we want to contribute to changing people’s eyes on rare diseases.
Living next to Hélio and seeing develop day after day is a blessing. He makes us better, more tenacious, more open-minded and more kind. Each day, we try with Hélio to make a strength out of his difference.
"This diagnosis changes nothing, and it changes everything.”
It’s now been 2 years that we went from being a ‘diagnostic-less’ family to the family of rare diseases. After 5 years of doctor hopping, and thanks to wonderful people met along the way (and a lot of tenacity), we finally were able to put a name on our son’s troubles.
This diagnosis changes nothing, and it changes everything. Today in 2022, while the future is still full of unknowns, we walk towards it much more serene and strong, and each day with Hélio is an encouragement. With our experience, with Hélio being so wonderful, strong and brave, we want to contribute to changing people’s eyes on rare diseases.
Living next to Hélio and seeing develop day after day is a blessing. He makes us better, more tenacious, more open-minded and more kind. Each day, we try with Hélio to make a strength out of his difference.
We are grateful to our son for making us live such intense moments, full of love.