Kélya,
at the origin of everything
It all starts with Kélya, our daughter.
From her very first days of life, we understood that her path would be different. So tiny, so fragile, she had to learn to live where other children progress naturally. Sucking, feeding, holding her head up, rolling over, crawling… each step required time, patience, and a tremendous amount of effort.
Alongside him, his twin brother was growing up without difficulty.
The comparison was there, obvious, impossible to ignore, and very quickly questions arose.
Absences, fatigue, hypotonia, hyperlaxity, absence of babbling…
His development, his gaze, his small head circumference which changed so little. Then this strabismus appeared very early, and the first glasses at only 7 months.
The tests followed one after another, including MRI, genetics and a long waiting period.
The MRI revealed atrophy of the cerebellar vermis, damage to the central part of the cerebellum, and a few months later, the genetic results came in:
Kélya has Dias-Logan syndrome.
Leaving the meeting, we immediately grabbed our phones to try and understand. Three results. Only three. A void. A lack of information. Unanswered questions.
Fear, incomprehension, anger, sadness…
This period has been profoundly difficult.
But little by little, we got back on our feet. Because we had to move forward. Because it was for her.
Today, Kélya is almost 4 years old. She is making progress every day.
She speaks, constructs her first sentences, understands a great deal and continues to learn, at her own pace.
Her balance remains fragile, fatigue greatly impacts her daily life and her body does not always keep up.
Some disorders appear in waves, then fade away.
But Kélya is also a deeply endearing little girl. A cuddly child, full of tenderness, who loves kisses.
She has this rare ability to give, to love, to create bonds, with a heartbreaking sincerity.
It teaches us to slow down, to see things differently, to savor every step forward, however small.
She's the one who started it all.
A few months after the diagnosis, faced with a lack of information and the need to take action,
We created our local and family association "Le Sourire de Kélya" to support her, help her and raise awareness of the syndrome.
Then, through exchanges with other families around the world, research and the journey undertaken, one thing became clear: we had to go further.
This is how the international association "Together for Dias-Logan Syndrome" was born, to connect families, structure data and support research on an international scale.
Together for Dias-Logan syndrome
(BCL11A-IDD)
Structure to move forward
Virginie
Mom of Kélya, Manoa and Timaé
Founder and treasurer of the associations:
- Together for Dias-Logan syndrome
(BCL11A-IDD)
- Kélya's Smile
Alexis
Dad of Kélya, Manoa and Timaé
Founder and president of the associations:
- Together for Dias-Logan syndrome
(BCL11A-IDD)
- Kélya's Smile
Together for Dias-Logan syndrome (BCL11A-IDD) was born quite naturally.
After Kélya's diagnosis, we found ourselves a little lost.
Very little information, very few points of reference... and above all, many questions.
So, we did what many parents do:
We searched.
We've read it.
We tried to understand.
Little by little, we started exchanging information with other families, all over the world.
And we realized that we were all experiencing, more or less, the same things.
That's how the idea of setting up an international association "Together for Dias-Logan syndrome (BCL11A-IDD)" came about.
Not like a "big project".
Just a simple desire to come together, share, and try to see things more clearly, together.
Today, we are moving forward at our own pace.
We are setting up tools, exchanging information with families, researchers, clinicians, and trying to structure the information we find.
In particular, we launched a census to better understand the patient journeys, map the symptoms, and gain visibility into the future. We are seeing what is common, what differs, and, at our level, contributing something useful to families and research.
Nothing is perfect, everything is under construction.
But we're making progress.
A huge thank you to the families who trust us, to those who support us near and far and who believe in what we are trying to build.
None of this would be possible without you.
Governance
A structured organization serving families
The Together for Dias-Logan syndrome (BCL11A-IDD) association relies on a progressive and structured organization, with the objective of uniting families internationally, while ensuring clear, coherent and sustainable governance.
Our approach is based on a balance between operational management, representation of families and collaboration with the scientific community.
The office
The office is the decision-making heart of the association. It ensures day-to-day management, the implementation of actions, and the coordination of projects.
Composition:
Alexis - President
Virginie, Vice President / Treasurer
Role:
Define and implement the association's actions
To ensure administrative and financial management
Represent the association to partners and institutions
Coordinate projects at the national and international level
The Board of Directors
The Board of Directors is currently being formed. Its aim is to gradually integrate families involved in the community, both in France and internationally.
​
His objectives:
Strengthening the representation of families
To provide a collective perspective on the association's direction
participate in strategic decisions
Our approach:
We take the time to identify and engage with families wishing to get involved, in order to build a governance that is coherent, committed and sustainable.
The community of families, the heart of the project
The association is based primarily on a community of families affected by Dias-Logan syndrome, united around a common goal: to better understand, better support and advance research.
Role:
Sharing experiences and journeys
Contribute to projects and initiatives
Participate in data collection
Increase international visibility of the syndrome
The Scientific Council
The establishment of a scientific council is an important step in the development of the association.
This is currently being considered and structured, in conjunction with healthcare professionals and researchers involved in or interested in the syndrome.
Goals:
To provide medical and scientific expertise
Guiding research directions
Contribute to the validation and dissemination of knowledge
Our aim is to build this council collaboratively, in line with the needs of families and the overall structure of the association.
A collective and international vision
We are convinced that the strength of such an initiative lies in the ability to bring families together within a common dynamic, beyond borders.
It is in this spirit that the association is open to all families concerned, with a desire to build, together, a solid, representative and forward-looking organization .
Friends of: Together for Dias-Logan Syndrome
USA
Amy
Mother of Blakelyn and Emersyn
President of the association:
- Together for Dias-Logan syndrome - USA
A first international dynamic emerged in the United States.
The "Friends of Together for Dias-Logan Syndrome - USA" project is led by Amy Stros, a committed mother who, like us, felt the need to take action in the face of the lack of information and the feeling of isolation that this diagnosis can cause.
Through this initiative, the goal is to create links between families in the area, to share experiences, and to continue to raise awareness of the syndrome, each at their own level.
This approach is fully in line with the spirit of "Together for Dias-Logan Syndrome (BCL11A-IDD)":
to remain united, to support each other, and to move forward together while allowing everyone to act locally.
This is an important step for us.
Seeing this type of initiative emerge reinforces our belief that something is being built.
A collective dynamic, driven by families, that transcends borders...
and which, step by step, is taking on an international dimension.
We would like to sincerely thank Amy for her commitment, her trust and her desire to move forward with us.
What she is initiating today goes far beyond a simple project.
It is a bond that is created, a strength that grows, and a hope that is shared.
Thank you, Amy