Parents of Children with HSP

Hello everyone and thank you for accepting me to the group.

My name is Yuliya and I am a mum from Russia. My 8-year-old son has

genetically confirmed FAR1-related complex hereditary spastic paraparesis

(CSPSD – cataracts, spastic paraparesis and speech delay).

He can walk only with hand-held support or with a walker/push cart. We are working a lot on stretching and strengthening and I am trying to learn how to help him as much as possible at home.

I would be very grateful for any advice or examples of daily stretching and exercise routines for children with spastic paraparesis/HSP – what really helped you or your child in practice. If there are parents here of children with FAR1 or similar rare genetic causes, I would be especially happy to connect.

Thank you so much in advance for any suggestions.