NAME: Pepijn
CURRENT AGE: 5
HOME TOWN & STATE: Onstwedde, Netherlands
DIAGNOSIS DATE: September 2018
PARENTS: Anne & Richard
SIBLINGS: Liezelotte
What it felt like when we learned our child has SLC6A1?
When we found out about Pepijn’s diagnosis, we felt absolutely devastated. Parents usually wish that their children grow up “normal” and without any difficulties. SLC6A1 is a definite difficulty but it makes Pepijn who he is and that brings us solace!
The hardest part of being an SLC6A1 family?
The hardest aspect of this journey is when others think they know what Pepijn needs. This constant external parental advice is exhausting. Please, step in our shoes for a day and then we can talk.
What are your dreams for Pepijn?
We want Pepijn to be able to just be himself and make the best out of his life.
Why would you like people to donate to SLC6A1 Connect?
Because this disease is so unknown, corporate businesses do not find it interesting to invest in SLC6A1 research. Your donations give us a chance for our children to be cured; you fund our hardworking scientists! We’re close… but we are not there yet.