Let's no longer remain invisible
Are you affected by Dias-Logan syndrome?
Every person registered helps make Dias-Logan syndrome more visible.
This world map provides a clearer picture of the presence of the syndrome around the world and shows that behind the numbers are children, adults and families.
To protect everyone's privacy, only limited information is visible:
age, sex and general location.
Personal contact details are never displayed.
Edith
7 years old / Belgium
"Edith is seven years old today. Although she was only recently diagnosed with Dias-Logan syndrome, as parents, we had felt from a very young age that some things didn't quite add up. For years, we lived with unanswered questions. A diagnosis doesn't magically solve everything, of course, but it finally puts into words what we have felt for so long."
Knowing how rare this syndrome is and how few families share this journey, discovering that you are not alone means a great deal.
Reading the stories of other parents brings a sense of recognition, and perhaps even a certain peace of mind, when you realise how much you see yourself in their experiences. In their doubts, their worries, their small victories. You only truly understand what this journey means when you live it yourself.
She is incredibly sociable and enthusiastic, and has a remarkable ability to win the hearts of everyone she meets. But she also has a very strong personality. Her mood can change within seconds, which can be difficult for both her and us to manage.
Edith has an intellectual disability as well as developmental delays in all areas. She has motor difficulties and verbal dyspraxia, which greatly affects her communication. She understands a great deal, but unfortunately has significant difficultycmaking herself understood.
Edith also had severe strabismus, which has already improved considerably thanks to surgery. She also has sleep difficulties, includind trouble falling asleep and waking during the night, which can make her days even more difficult.
During her early years, Edith also had significant difficulties with eating, but fortunately this has improved greatly over time.
"Edith is a joyful, sensitive, and strong little girl."
To support her in all these areas, she has received intensive speech therapy and physiotherapy since the age of two. Thanks to this, she makes progress every day, little by little. We celebrate these achievements wholeheartedly, because they require an enormous amount of effort from her. These small moments of progress are like little sparks of light for us, gentle reminders that she is finding her own path, at her own pace.
The road has been long, and probably always will be. We continue to move forward, often throught unfamiliar territory, searching for answers, care, and recognition. Over time, we have discovered how important it is to surround ourselves with the right people—those who bring light when everything seems dark and who give us the strength to keep going.
At the same time, Edith has taught us to see the world differently. Every day, she shows us how resilient a child can be. Her humour, her determination, and her ability to adapt to new situations make us incredibly proud.
And yet, the future remains uncertain. We don't dare look too far ahead, because the questions that arise often seem heavier than the answers we have today.
Will she be able to live independently one day? Will she always need us to remain close to her? These are questions we think about, but that we cannot yet fully face.
That is why we move forward day by day, step by step. We follow the pace Edith sets for herself, trusting in the small steps forward that take on new meaning each day.
Dias-Logan syndrome is a challenge, but it has also brought our family closer together. We live more consciously, we are more grateful to the people who choose to walk alongside us, and we feel more connected to the stories of other families.
We hope our story can help other families feel they are not alone. That there will always be a hand that understands, a shoulder that helps carry the weight, and a community around them.
Testimony from Hanne, Edith's mother