First STXBP1 Family Meeting in Germany!
Finally, it was on 29 September 2023 so far, after months of long preparations of the STXBP1 e.V..
On September 29th, 20 STXBP1 families drove for a 3-day-stay up to 8 hours by car to the first German STXBP1 family meeting in the Rhön Park Hotel - Aktiv Resort in Hausen-Roth.
What a weekend. Most of the families only knew each other from the WhatsApp group and had never met live. It was a very special weekend. The personal exchange of experiences with the STXBP1-RD disease, which became possible in this way, was a very special experience for everyone.
The common breakfast, lunch and dinner allowed many intensive conversations.
Relaxation was provided for everyone: a bowling evening for parents and siblings, walks together through the beautiful, relaxing Rhön landscape, happy, laughing STXers with siblings in their club T-shirts with the cute lion in the wheelchair and rabbit, playful fun on the trampoline or slide in the indoor or outdoor area of the hotel, not to forget the fun in the swimming pool and at the children's disco on the last evening.
It was remarkable to observe how the STXers communicated with each other. A 4-year-old stood in front of an 11-year-old in a wheelchair and they looked into each other's eyes for a long time, engrossed. Another STXer tenderly stroked the face of a little STXer fellow. Then the little robber, he crawled around the room, finding it exciting to crawl in circles around a little boy who was sitting on the floor, laughing. Happy, joyful, laughing, non-verbal STXBP1 children who don't need words to communicate but can converse with facial expressions, body touch, eye contact and body gestures. A valuable experience for the parents and a reason for the association to facilitate several such family meetings in the future with donations.
Thankful for the donations and the successful weekend, the 20 families set off again on the long journey home on October 1, 2023, with a lot of experience in their luggage, hoping to meet again soon.
