Help Timo – WOREE Syndrome
Gene Therapy – Finished
Dear all,
We would like to share a long‑awaited update about Timo and the gene therapy project.
Thanks to your continuous support, we were able to fund and develop the therapy at record‑breaking speed. It was an immense challenge, with many hurdles along the way, but in January this year, Timo finally received the gene therapy injection directly into his brain.
The effects of such a treatment take time to appear. So far, there is only one very small observable change, and we are hoping that the therapy will at least help prevent further deterioration. We continue to monitor him closely and hope for the best.
We chose to wait before announcing this progress because Timo faced significant respiratory issues for a long period and remained hospitalized until mid‑March.
None of this would have been possible without your generosity and solidarity.
From the bottom of our hearts, thank you for giving Timo this chance. It means more to us than we can express.
Timo & Family
A big thank you to each and everyone who has contributed, and special thanks to:
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Events / Updates
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.
