Mum Bertille
An architect who also practises breathwork. She started painting again after Finn’s diagnosis, which grew into the card project. In the podcast “Le chemin de Finn” she tells Finn’s story.
About us
We are Finn’s family
We are fighting to give Finn a chance at gene therapy – and to make things easier for families like ours in the future.
Who we are
We stand by Finn
Dad David
An entrepreneur, SEO consultant and coach. Runs the fundraiser for Finn’s gene therapy together with Bertille and sits on the board of SLC6A1 Deutschland e.V.
Brother Milo
Finn’s little brother – and simply a little treasure. Always there.
Our mission
What we are fighting for
Give Finn a chance
A gene therapy could change Finn’s life. For that we need around €1 million – the first milestone is €250,000.
Move research forward
We are involved with SLC6A1 Deutschland e.V. and the SLC6A1 Europe Alliance to help research move faster – for Finn and for every child with SLC6A1.
Raise awareness
SLC6A1 is extremely rare and hardly known. We tell Finn’s story so that families get a diagnosis sooner and don’t feel alone.
Our promise: if gene therapy for Finn does not happen, every euro goes to SLC6A1 Deutschland e.V. or SLC6A1 Connect. This is a private fundraiser, so we cannot issue tax receipts.
Our week
A typical week for us
Finn’s appointments are only the visible part. Behind the scenes there is a great deal going on – week after week, alongside work and family life.
Doctors and therapies
We take Finn to his doctors and therapies and organise everything around them.
Doing our own research
We read studies and follow the research to understand what could help Finn.
Working with the associations
We are involved nationally with SLC6A1 Deutschland e.V. and at European level with the SLC6A1 Europe Alliance.
Sharing with other families
We share experiences with other affected families: what helps, what doesn’t? They understand what our everyday life looks like.
Getting through difficult moments
We help Finn through his meltdowns, teach him things with patience and help him cope with disappointment and feeling overwhelmed.
What worries us
The question of tomorrow
Will Finn be independent?
Will he one day be able to live on his own and fulfil his own dreams? That question is with us every day.
Where will Finn go to school?
This is on our minds a lot right now. Again and again we have to find a place where Finn is in good hands – somewhere he belongs.
Financial worries
The question of how we can manage all this in the long run is also part of our everyday life.
That Finn could lose what he has learned
With SLC6A1, some children lose skills they already had – a bit like dementia. Studies put this at 13 to 33% of children; seizures or infections can trigger it, but often there is no clear cause. Many regain some of what they lost, but we want to hold on to every step Finn works so hard for.
What keeps us going
Our families carry us
Above all, our family gives us strength: Oma and Opa, Grandma and Grandpère are there for us and the boys.
And then there are our “adopted” grandma and grandpa: once a week, Finn gets to spend time with them.