Champions Corner
Everyone has their own pace, everyone has their own victories!
To all the Valiant Champions 😉💪
Find them in the videos of our events, in the testimonials, in the media....
A video to listen to!
You matter, she matters, I matter too!
"I have difficulty with many things to do... for us research is very important... I thank you for that..."Amel
From February to April 2025 at the Rouen University Hospital, patient inclusions will take place as part of the project to characterize language, cognitive and behavioral disorders in MYT1L syndrome. These are strong moments, where people with this syndrome find a place for expression and are "precious".
With Alice, we had the chance to share lunch with these two young women, Carla, 19, and Amel, 35.
😃 For Carla, it was a big first. At 19, she had never met anyone with the same pathology as her.
Her smile and her emotions were intense. A spontaneity and sharing during lunch that spoke volumes: "Let's toast to our meeting! I'm happy, I'm happy with this day. It's so good."
🥹 For Amel, joy was mixed with tears. She was overwhelmed to count!
She was overwhelmed by the attention, the listening that was given to her, moved by the prospect of helping to understand how MYT1L people function so that one day, her daily life, which locks her up so much and of which she is so aware, can change... That it can change the perspectives for everyone.
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HALLOWEEN!
Sharing together despite the distances
Here's a look back at the Vaillants meetings at the start of 2024
MARCH-APRIL 2024
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Experimentation of 5 Narrative Medicine writing workshops on rare-cause TND linked to the MYT1L gene with Aurélie Chupin, a speech therapist, as part of a University Certificate. These workshops took place in Rouen, both face-to-face and by videoconference. Three families took part. We would like to thank Ms Chupin for sharing so much with us and congratulate her on obtaining her certificate with the congratulations of the jury.
JUNE 2024
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Meeting of 3 French Vaillants (Elio, Elisa and Alice), siblings and parents over a barbecue and games in the swimming pool in Rouen.
JULY 2024
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Nine visits Rouen with her mum. The weather wasn't great, but the ‘heart’ manicures were top-notch!
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We had the pleasure of sharing lunch with Serena and her family. A reunion with Jeni and her family, a mix of French and English, and all in good humour! We met Jeni and Serena at the 1st International MYT1L Gene Day in Rouen in November 2022.
AUGUST 2024
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Visit from Alissa and her family! A great first for this 16-year-old English girl, who was meeting a Valiant like herself for the first time! We'll be meeting again at the next International Gene Day in Rouen in JUNE 2025, and it's a real pleasure!
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PARIS 2024 Paralympics, just incredible! 3 families were able to meet up at the Stade de France for para-athletics events and 2 families took part in wheelchair basketball. Thanks again to the Alliance des Maladies Rares and its partners for this huge opportunity.
Not forgetting the correspondence between Vaillants France and Vaillants England and all the sharing, emails and phone calls between families.
SHARING GOOD NEWS: IRIS
The parents of the lovely Iris have sent us some excellent news.
Before coming on her majority at the end of August, Iris has already been able to celebrate obtaining her CAP Cuisine diploma (Production Service Restauration) with a distinction "mention BIEN".
A CAP in two years, following a course at middle school (Ulis: ordinary scool with special cares) and then at vocational high school (lycée professionnel) with Ulis support also.
Iris has blossomed, risen to the challenges and succeeded with panache,
BRAVO IRIS, Congratulations!
Her dream now is a CAP Pâtisserie diploma!
Can't wait to follow your new adventures, Iris! July 2024
Thank you to these FATHERS of Valliants for bearing witness to their journey alongside their child.
There's no such thing as regarding a glass as either half full or half empty.
There are different expressions of pathology, realities that take us to the very depths, and also sublimate.
These are the realities of a whole, special life, accompanying a child who is not quite like the others.
It takes determination, willpower, endurance and resilience.
There is suffering and confusion,
and always, love and the hope of making things different, better.
Vaillant.e's mothers tell their stories...
They tell you their feelings about this unexpected, unmarked journey...
Synthetic thoughts and cool shots!
A big thank you to them for their trust, for lifting a part of the veil of their daily lives.
Le Père noël a distribué 31 cadeaux aux Vaillants cette année Merci Père Noël ;-) !
Santa Claus delivered 31 gifts to the Vaillants this year in France
Thank you Santa ;-)!
2023
The calendar is still active ;-)!
Les Vaillants have TALENT, LILA the rider!
To read the entire magazine,
click on the image (french)
🎥 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?"
https://www.6play.fr/un-jour-un-doc-p_22196/la-vie-ne-les-a-pas-epargnes-ils-sont-differents-et-alors-1-2-c_13002007
https://www.6play.fr/un-jour-un-doc-p_22196/la-vie-ne-les-a-pas-epargnes-ils-sont-differents-et-alors-2-2-c_13002008
Long live Candlemas, long live the pancakes in madness!
The Valiants are in the kitchen 👩 🍳🧑 🍳...
Watch your eyes 😋, yum!
Proposal
Their achievements!
A meeting of families, clinicians, researchers
IS IT REALLY USEFUL?
FAMILY WORDS
You followed us, find out what you helped achieve.
Are you discovering us? Become aware of what you are going to accompany.
Click on the images to enlarge them
INCLUSION - ACCESS TO WORK
PLEASURE, RECOGNITION AND PRIDE
Congratulations to the Extra-Vaillante who is part of this adventure!
Congratulations to everyone for this magnificent project and we wish you GREAT SUCCESS!!!
Mark your calendars... get set? Book!
For the lucky ones near Aix en Provence
TESTIMONY
ADAM, 7 years old
Thanks to Claire, Adam's mother, for spontaneously offering to share her experience with you. She testifies with simplicity and generosity about Adam's journey and the family's daily life.
Claire: “Every experience should be shared with others, it allows us to feel less alone and also to share our successes.”
ADAM is a fan of Mika and especially of the song "Elle me dit".
So...dance, dance, dance!"🕺 🕺
June 2022
TESTIMONY
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
Read the moving testimony of Mareike and her husband Jens. They live in Germany and their little Jonte is a carrier of a mutation on the MYT1L gene.
They 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 the interview with Dr Mall and the testimony of Jonte's parents on the site https://myt1l.de/ (German site)
Thank you Mareike and Jens for sharing this, thank you for connecting the countries for each of those we tenderly call our Valiants.
April 2022
TESTIMONY
Alice, 9 and a half years old
Our daughter Alice is 9 and a half years old. We were diagnosed 2 years ago now. Although we have been struggling to get answers for several years, the news of the rare genetic disease was a bolt from the blue, a collapse, the unknown when we had hoped so much to know, to have a vision of what our daughter's future would be like. It was seeing Alice seizing life, curious and relentless, remembering all her progress over the years that was a driving force at that time, and the words of our geneticist: - "It's not degenerative" - "We don't know... move forward, continue! If it has to stop one day, we'll see then, in the meantime move forward, continue, she is progressing." We continued everything we had put in place for Alice until then. We already had a 5-year history 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 range 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 significant work of the genetic team of the Rouen University Hospital on the gene, to the creation of the association Les Extra-Vaillants MYT1L accompanied by another Rouen family. By clicking on the button, you will discover a lot of Alice's journey. March 2022
TESTIMONY
Alix, 32 years old
We have the great pleasure to present to you Alix .
Alix At 32, she is a carrier of MYT1L syndrome and only found out about it relatively recently.
She agreed to answer our questions! 😃 Thank you, thank you.
Click on the button to discover his humorous testimony!
Alix also shares memories from CE2, illustrations and copies of poetry: "I must be 9 years old. I was still better at it when I was given time!"
Jan 2022
TESTIMONY
We are the parents of Alice, 9 years old. Alice is a carrier of MYT1L syndrome.
A vestibular and proprioceptive disorder prevents Alice from carrying out activities such as going down a slide, enjoying certain rides, climbing wall bars, riding a pony, skiing, cycling, going down an escalator or climbing openwork steps, etc.
And yet her determination is still such that she has taken up the challenge of skiing brilliantly and not without emotion!
Alice got her Blanchot in the snow garden, and discovered the pleasure of skiing without the constraints of coordination or anything else, thanks to chair skiing.
Just the pleasure of sliding on the slopes, taking the chairlift and the gondola, and going to greet the summits.
A family sharing with an extraordinary instructor: thank you again Thomas!
Discover one of his descents.
Dec2021
🖋🎥. CALL TO SHARE YOUR EXPERIENCES 😃 🤗
Would you agree to share your experiences with the Vaillant MYT1L , or those of your little Vaillant?
Would you agree to share one of your, his, or her victories, explaining what step was taken and what difficulty was overcome?
Your testimony can be shared anonymously if you wish.
We have prepared testimonial guides if needed.
You can contact us at the following email address: extravaillants@gmail.com
Thank you, thank you in advance because it is important to share experiences when we live the same thing, although this syndrome is expressed in varied ways and everyone remains unique! 😉😊