Jorden's story - The Big Give Christmas Challenge 2021

Updated: Nov 15, 2021



I’m Jorden, big sister to my only sibling Maddi who is 14 years old and has MPS III C Sanfilippo Disease.


I wanted to let you know about the Big Give Christmas Challenge which takes place between 30th November to 7th December. It’s a great opportunity to help fund the MPS Society’s mental health and wellbeing services.

Over the years, as a family, we have leant heavily on the MPS Society and it has been our anchor. We have been able to make the most of amazing opportunities to meet other families and not feel so alone, as well as knowing that there is unwavering support from the Support and Advocacy team.


I decided to join the online workshop for adult siblings to meet other siblings and share similar experiences. The needs of unaffected siblings are sometimes overlooked as members of the family who support their parents and help with caregiving. It can feel lonely sometimes, like being on the sidelines: being aware of my parents’ stress as well as what’s happening to my sister.


The session appealed to me as it was less daunting to meet new people online and easily accessible. The workshop enabled group members to explore their feelings. It was reassuring to hear that we had a common understanding of the challenges as well as the positive aspects of being a sibling. We have set up our own WhatsApp group so that we can keep in contact and support each other.


The MPS Society provides invaluable support for families. Mental health and wellbeing support is important to give siblings, parents, carers and other family members the opportunity to deal with the stresses and worries they may have. Having access to this type of support can help members of our community feel less isolated and more connected.


The MPS Society is trying to raise £15,000 for mental health support services 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.