Bertille, Finn's mum
Started painting again after Finn's diagnosis – which grew into the card project. Tells Finn's story in the podcast “Le chemin de Finn”.
About Finn
This is Finn
Four years old, from Waldbronn near Karlsruhe, Germany. A boy who comes alive outdoors, who laughs when he runs, and who has to fight harder than other children for every small step.
What Finn loves
Sand on his hands, wind in his face
Finn is happiest outdoors. In the sandpit, on the slide, roughhousing with his dad, cuddling with his mum and with his little brother Milo by his side.
Finn's everyday life
What Finn handles every day
Finn has an extremely rare change in the SLC6A1 gene. You can't see it by looking at him. But it is part of every one of his days:
- Epileptic seizures, several types
- Speaking is hard for him
- He needs more time to process
- Restless nights
- Intense meltdowns when it all gets too much
- Tremors and balance problems
- Frequent falls
- Low muscle tone and weak posture
- He tires quickly
- He runs out of energy sooner when playing and doing sport
Finn’s typical week
- Tuesday afternoon: special-needs support
- Friday afternoon: occupational therapy
- 1× a month at the doctor’s
- 1× a quarter: an EEG
Other children spend their afternoons at sports clubs – Finn goes to therapy. And every doctor’s appointment takes much longer for him than for other children.
Finn today
Small steps that are huge
For Finn, learning happens through repetition – a lot of repetition. For about a year now, we have been practising numbers with him: with songs, games and signs. He can’t count to 20 yet.
But sometimes, after months, he suddenly recognises a number. Or he copies a sign we have shown him countless times. To us, these small steps are huge. They show that Finn can learn – he just needs more time, a lot of patience and people who keep going with him.
Finn's journey
From the first tremors to today
Before the diagnosis there was a gut feeling. Many stages followed – each helped us understand a little more about what is going on with Finn.
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Finn is born
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First signs
We notice tremor episodes for the first time. The paediatrician says he will grow out of it. But the episodes continue.
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A growing feeling
More and more we sense that Finn is not developing like other children. He withdraws more and more into himself.
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Early intervention centre, Karlsruhe
At the early intervention centre in Karlsruhe, developmental delays are found in all areas.
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Epilepsy diagnosis
An EEG, followed by immediate admission to Städtisches Klinikum Karlsruhe, where epilepsy is diagnosed. Before his first medication Finn has more than 200 absence seizures a day. He gets medication, the tremor episodes decrease, and we start to hope.
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Genetic diagnosis: SLC6A1
Genetic testing reveals an extremely rare variant in the SLC6A1 gene. A shock – and the start of everything we do today.
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The medication isn't enough
The medication has to be adjusted again and again, but it doesn't bring the seizures under control.
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Kork Epilepsy Centre
Stay at the Kork Epilepsy Centre to readjust the medication. Since then, Finn's seizures have been well controlled.
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Starting Ravicti
Finn starts Ravicti (4-phenylbutyrate) as an off-label medication.
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Four and full of life
We are raising money for a gene therapy that could give Finn a real chance.
Finn's family
We stand by Finn's side
David, Finn's dad
Runs the fundraiser for Finn's gene therapy together with Bertille and sits on the board of SLC6A1 Deutschland e.V.
Milo, his brother
Finn's little brother. Always right there with him.
Who is by Finn's side
We are not alone
Medical care, support and everyday life
eduKAtiva KarlsruheSpecial-needs support
Städtisches Klinikum KarlsruheSocial paediatric centre
Universitätsklinikum HeidelbergSocial paediatric centre
Kork Epilepsy CentreDiakonie Kork, Kehl
Kindergarten SchwalbennestKindergarten
Community
SLC6A1 Deutschland e.V.Association of affected families in Germany · David is on the board
SLC6A1 Europe AllianceEuropean network for research and families
SLC6A1 ConnectInternational patient organisation
Supporters
- Uwe Klössing Photographer · took the photos on this site
- Nübold Architekten Bertille’s employer · spreads the word about our fundraiser
- Musikverein Edelweiß Busenbach Benefit concert for Finn on 21 November 2026
- Kirchengemeinde Etzenrot Bazaar for Finn on 22 November 2026
- Stelzenmännchen Karlsruhe Förderverein für krebskranke Kinder Karlsruhe e.V.
- 297 people have already donated for Finn via GoFundMe and Ulule. Thank you! (as of 3 November 2026)
Would you like to support Finn too – with a concert, a bazaar, a campaign at your club or company, or simply by spreading the word about our fundraiser? Write to us. We are grateful for every bit of help and will gladly add you here.
Become a supporter