I’m Lucy, mum to eighteen-year-old Hannah who has MPS VI Maroteaux-Lamy and her younger brother Ben. Hannah is now in her first year at the University of Nottingham.
Looking back to when we first received Hannah’s diagnosis sixteen years ago, it feels as if we have been on a roller coaster ride. Hannah's MPS VI affects her whole body and daily life, but not her brain and she wants to do what everyone else wants to do.
The support from the MPS Society has been amazing: from always being there at the end of the phone to producing literature in a non-medical language that is really good. MPS events have given us opportunities to connect with other families outside of the hospital environment, which has helped to build a network of support.
Having access to mental health and wellbeing support is vital for families, particularly during the pandemic when our community is not able to meet in person. I attended an online workshop for parents and carers about supporting siblings of disabled children. There were useful resources and I thought that members of the group had a common connection with one another which helped with any feelings of isolation. We discussed the challenges faced by siblings and hearing from other parents was reassuring. Sharing experiences and worries can help us to feel that we are not alone.
Workshops, mindfulness courses and counselling sessions can all help families to feel supported and less isolated. Sharing experiences with others who understand the impact of MPS, Fabry and related diseases on the whole family can help reduce the stresses this can bring. If you can help by making a donation we will be able to help more families who might be struggling.
The MPS Society is trying to raise £15,000 to fund mental health and wellbeing services for 2021 and they need your help. Donations for their Big Give Christmas Challenge open from 12pm on Tuesday 30th November to 12pm on Tuesday 7th December. Please click here to donate between these dates.
