Help Timo – WOREE Syndrome
Fundraising – Ongoing
You too can contribute to Timo’s only chance at a future, by:
- donating onto one of the following accounts
Timo Hirtz – BCEELULL – LU84 0019 7855 5398 6000
T.I.M.O. a.s.b.l. – CCPLLULL – LU72 1111 7768 7401 0000 - donating onto our GoFundMe campaign
A big thank you to each and everyone who has contributed, and special thanks to:
Translations ongoing …
Events / Updates
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Stream pour Timo – Un mois de solidarité sur Twitch
Porté par la streameuse Anxifera, un mouvement de solidarité prend vie sur Twitch sous le nom “Stream pour Timo”. Tout au long du mois d’août, plusieurs streameuses et streamers se mobilisent à travers des livestreams pour sensibiliser à la cause de Timo et soutenir son combat contre le syndrome WOREE. Parmi les participants à cette
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Solidarité – e-Lake
Notre appel à la solidarité a été bien reçu par les organisateurs du festival e-Lake, qui ont proposé une action originale de collecte de dons : 🎶 Les visiteurs pourront choisir de faire don de leurs gobelets réutilisables à Timo. La consigne de chaque gobelet sera alors reversée à notre cause. 🙏 Merci à l’équipe
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Partager, sensibiliser, mobiliser – Témoignages dans L’essentiel et Wort
Afin de faire connaître l’histoire de Timo, sensibiliser à la réalité du syndrome WOREE et appeler à la solidarité, nous avons eu la chance d’échanger avec les médias L’essentiel et Wort. Ces entretiens ont permis de porter notre message plus largement, de mettre en lumière les défis liés aux maladies génétiques rares, et de montrer
Who is Timo?
Timo is the second child of the founders Jing et Paul.
Since his birth, his behaviour was concerning: he slept far too much and almost never cried.
Before he was even 2 month old, he showed signs of epilepsy, a diagnosis that got confirmed during his hospitalisation in January.
After numerous examinations and a month-long wait for the genetic results, the verdict came: Timo has WOREE syndrome.
What’s WOREE?
WOREE means WWOX-related Epileptic Encephalopathy
WWOX is a gene and enzyme essential for the normal development of the central nervous system and the proper functioning of neurons.
WOREE is a recessive mutation of the WWOX gene, rendering it ineffective, even absent. It is an extremely rare and devastating disease, affecting fewer than 100 children worldwide, with no treatment in existence.
Among its consequences are severe developmental delays, refractory epilepsy, and an average life expectancy of just four years.
What does it mean for Timo?
Timo suffers from epileptic seizures and infantile spasms.
His epilepsy is constantly evolving and must be managed through a combination of anti-epileptic medication, several B vitamins, and a strict ketogenic diet.
Today, his global developmental delays are becoming increasingly apparent: he barely moves, his neck and head control are severely limited, and apart from a few occasional cries, he is completely non-vocal.
What can be done?
We identified a biotech company abroad with the capability to research and develop a custom gene therapy tailored to Timo.
This treatment comes at a significant cost: around €300,000.
70% of this amount is dedicated to developing the therapy.
The remaining 30% covers the administrative costs of delivering the treatment, including hospital fees and medical professionals’ charges.
Time is a critical. The sooner Timo can receive this therapy, the greater his chances of having a future.
How can you help ?
Contribute financially with at donation to:
– Timo Hirtz – BCEELULL – LU84 0019 7855 5398 6000
– T.I.M.O. a.s.b.l. – CCPLLULL – LU72 1111 7768 7401 0000
– GoFundMe: https://gofund.me/e1971cc6
Launch a fundraising initiative, organise an event, an internal campaign, or a solidarity challenge within your association, community, or network to help raise funds for Timo.
Spread the word, share Timo’s story and our urgent need for funding across your own networks and communication platforms.
Every share matters to reach more hearts.
