- C
- G
Timo was born in November 2024, a beautiful, tiny angel.
But just two months later, our lives were turned upside down when he began having epileptic seizures. After many examinations and genetic tests, Timo was diagnosed with WOREE syndrome (WWOX-related encephalopathy) — a very rare and severe genetic condition affecting only about 100 people worldwide.
Timo Hirtz – BCEELULL – LU84 0019 7855 5398 6000
What this means for Timo?
- Timo suffers from epileptic seizures and infantile spasms. With a combination of Vigabatrin, different Vitamin B supplements and a Ketogenic diet, his epilepsy is currently under control.
- WOREE causes profound global delay and severe cognitive impairment, which is showing more and more in Timo. As of today, at 8 months old, Timo barely moves, has very little neck and head control, and aside from occasional crying, is completely non-vocal — and he will likely remain so.
- The average life expectancy for children with WOREE is just 3 to 4 years.
There is Hope: A Customized Gene Therapy Could Save Him
- The estimation for the development and application of the treatment costs €300'000.
- Time is critical — The sooner the treatment begins, the better Timo's chances. We simply don't know how much time Timo has left.
How You Can Help:
We need urgent funding to:
- Develop and administer Timo's custom gene therapy
- Give him the only known chance at a better life
- Help us fight against this devastating disease
Every donation, every share, every act of support and kindness brings us closer to giving Timo a future.
Even if you can’t donate, simply sharing this page could help us reach someone who can.
https://www.lessentiel.lu/fr/story/au-luxembourg-les-parents-de-timo-ont-besoin-de-500-000-euros-pour-le-sauver-103377922
Please help us give our son a chance to live.
With love and hope,
Timo's family
Together with T.I.M.O. - Trust in Medical Opportunities a.s.b.l.
(Updated 18.07.2025)