To each his own pace, to each his victories!
To all the Valiant Champions 😉💪
🎥 THE DIFFERENCE IS THEY WHO TALK ABOUT IT BEST!
Find the testimony of Alix carrier of the neurodevelopmental disorder linked to the geneMYT1L 🧡
Alix is 33 years old, she works and lives in her own home: "like everyone else, because I am like everyone else with something more and not less" (a summary extract of part of her testimony ).
M6: One Day, a Doc in 2 episodes, "life has not spared them, they are different, so what?"
Discover Valiant MYT1L
STRONG and PROUD
Rare Diseases in data in pictures
Long live Candlemas, long live the pancakes in madness!
The Valiants are in the kitchen 👩 🍳🧑 🍳...
Watch your eyes 😋, yum!
(they will be completed over time)
IS IT REALLY USEFUL?
You can ask yourself the question, it is legitimate.
You followed us, find out what you helped to achieve.
You are still hesitating, so be aware of what you are going to accompany
Click on images to enlarge
INCLUSION - ACCESS TO WORK
PLEASURE, RECOGNITION AND PRIDE
Congratulations to the Extra-Vaillante who is part of this adventure!
Congratulations to all for this magnificent project and we wish you a GREAT SUCCESS!!!
On your calendars....ready? Book!
For the lucky ones near Aix en Provence
Adam, 7 years old
Thanks to Claire, Adam's mother, for spontaneously offering to share her experience with you. It bears witness with simplicity and generosity to Adam's journey and the daily life of the family.
Claire: "Each experience must be shared with others, it allows us to feel less alone and also to share our successes."
ADAM is a fan of Mika and particularly of the song "Elle me dit".
So... dance, dance, dance!"🕺 🕺
JONTE, 4 and a half years old
"Life might be less tiring if I hadn't met you. But it wouldn't be my life." Erich Fried
Find the moving testimony of Mareike and her husband Jens. They live in Germany and their little Jonte carries a mutation in the MYT1L gene.
They have created a German site on this syndrome linked to the MYT1L gene and are in contact with Dr Mortiz Mall who has been carrying out basic research on this gene since 2012 with a dedicated team since 2018.
Find Dr Mall's interview and the testimony of Jonte's parents on the site https://myt1l.de/ (German site)
Thank you Mareike and Jens for this sharing, thank you for connecting the countries for each of those we tenderly call our Valiants.
Alice, 9 and a half years old
Our daughter Alice is 9 and a half years old. We had the diagnosis 2 years ago now. Although we had been struggling for answers for several years, the announcement of the rare genetic disease was a thunderclap, a collapse, the unknown when we hoped so much to know, to have a vision of what the aftermath of our daughter.
It was seeing Alice crunch life, curious and relentless, remembering all her progress over the past years that was a driving force at that time, and the words of our geneticist:
- "It's not degenerative"
- "We don't know… go ahead, go on!" If it has to stop one day, we will see at that time, in the meantime move forward, continue, she is progressing. »
We continued with everything we had in place for Alice so far. We already had a history of 5 years of fighting to obtain a diagnosis, appropriate care, to make heard, not only the difficulties to compensate, but ALL of Alice's skills, and the field of possibilities for her.
With the diagnosis came contact with other families in France and internationally. The heterogeneity of the situations, the needs, the expectations, the worries, the hopes, the struggles... all this contributed, with the consequent work on the gene by the genetic team of the CHU of Rouen and the meeting of a Rouennaise family , to the creation of the association Les Extra-Vaillants MYT1L.
By clicking on the button, you will discover more about her. March 2022
Alix, 32 years old
We have the great pleasure to introduce you Alix .
Alix At 32, she carries MYT1L syndrome and only learned about it recently.
She agreed to answer our questions! 😃 Thank you, thank you Alix.
Click on the button to discover her testimony!
Alix also shares some school memories (3rd grade US), illustrations and copies of poetry: "I was about 9 years old and I managed better when I was given plenty of time!"
We are the parents of Alice, 9 years old. Alice is a carrier of MYT1L syndrome.
A vestibular and proprioceptive disorder prevents Alice from performing activities such as tobogganing, enjoying certain rides, climbing a wall bar, riding a pony, skiing, cycling, descending an escalator or climbing open steps….
And yet her determination is still such that she took up the challenge of skiing brilliantly and not without emotion!
Alice obtained her Blanchot in the snow garden, and discovered the pleasure of skiing without coordination or other constraints, thanks to chair skiing.
Just the pleasure of sliding on the slopes, taking the chairlift and the gondola, and going to greet the peaks.
A family sharing with an extraordinary instructor: thank you again Thomas!
Discover one of her descents.
🖋🎥. CALL TO SHARE YOUR EXPERIENCES 😃 🤗
Would you agree to share your experiences of Vaillant MYT1L , or those of your little Vaillant?
Would you agree to share one of your, his, victories by explaining what step was taken and what difficulty was overcome?
Your testimony can be broadcast anonymously if you wish.
We have prepared testimonial guides if needed.
You can reach us at the email address: email@example.com
Thank you, thank you in advance because it is important to share experiences when you are going through the same thing, although this syndrome is expressed in a variety of ways and everyone remains unique! 😉😊