1mil’Lya
An association working for children with neurological disorders
🤩 Discover our world 🤩
L
like Lya
I’m Lya 😊 I’m 4 years old today, and I’ve been my parents’ ray of sunshine since July 2022!
I live in Haute-Savoie, in the commune of Sales.
I marvel at the vastness and beauty of the trees that nature offers us!
But what I like best is when my dad comes home from work, because that’s when I laugh out loud thanks to his tickling.
Y
the chromosome that makes me unique in the world !
I have had alternating hemiplegia since birth; it is a rare neurological disorder affecting one in a million people (hence the name of my association 😉). It is caused by a mutation in the ATP1A3 gene ATP1A3.
Today, it is a disease that cannot be cured, but tomorrow, thanks to your help, everything could change !
On a daily basis, I suffer from attacks :
- Of paralysis (which can last a few minutes or several days)
- From dystonia (comparable to a cramp, it causes me a great deal of pain)
- Epilepsy that is difficult to stabilize and control with currently available treatments.
These attacks take a heavy toll on my body (head, lungs, heart, eyes, etc.), consistently requiring respiratory support with supplemental oxygen and monitoring of my heart rate.
A
Founding of the association
The association’s primary goal is to support and actively participate in research into alternating hemiplegia. Since the gene was discovered in 2012, doctors have taken a keen interest in what Lya and her friends are experiencing.
So, it is now or never that we need you to help us fund the research…
The aim of all this research is to find explanations, treatments, or forms of support for physical and psychological suffering.
The association also helps families fund the equipment they need and provides entertainment for all the children through the events we organize.
💜 A Godfather 💜
who climbs far more than mountains
For Florian, the founder of Broken, becoming a mentor was a natural choice.
He fights alongside his team every day to raise funds and raise global awareness about these surreal situations.
With every race he organizes, what motivates him to the very core of his being is meeting Lya at the finish line.
1mil’Lya
An association working for children with neurological disorders
🤩 Discover our world 🤩
L
like Lya
I’m Lya 😊 I’m 4 years old today, and I’ve been my parents’ ray of sunshine since July 2022!
I live in Haute-Savoie, in the commune of Sales.
I marvel at the vastness and beauty of the trees that nature offers us!
But what I like best is when my dad comes home from work, because that’s when I laugh out loud thanks to his tickling.
Y
the chromosome that makes me unique in the world !
I have had alternating hemiplegia since birth; it is a rare neurological disorder affecting one in a million people (hence the name of my association 😉). It is caused by a mutation in the ATP1A3 gene .
Today, it is a disease that cannot be cured, but tomorrow, thanks to your help, everything could change !
On a daily basis, I suffer from attacks :
- Of paralysis (which can last a few minutes or several days)
- From dystonia (comparable to a cramp, it causes me a great deal of pain)
- Epilepsy that is difficult to stabilize and control with currently available treatments.
These attacks take a heavy toll on my body (head, lungs, heart, eyes, etc.), consistently requiring respiratory support with supplemental oxygen and monitoring of my heart rate.
A
Founding of the association
The association’s primary goal is to support and actively participate in research into alternating hemiplegia. Since the gene was discovered in 2012, doctors have taken a keen interest in what Lya and her friends are experiencing.
So, it is now or never that we need you to help us fund the research…
The aim of all this research is to find explanations, treatments, or forms of support for physical and psychological suffering.
The association also helps families fund the equipment they need and provides entertainment for all the children through the events we organize.
💜 A Godfather 💜
💜who climbs far more than mountains💜
For Florian, the founder of Broken, becoming a mentor was a natural choice.
He fights alongside his team every day to raise funds and raise global awareness about these surreal situations.
With every race he organizes, what motivates him to the very core of his being is meeting Lya at the finish line.
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