Determined 14-year-old Maddison Crockford-Reid has a rare condition – Sanfilippo Syndrome – for which there is no cure.
Her devastated Paulsgrove family have been struggling to come to terms with the fact she is unlikely to make it past her late teens since her shock diagnosis in August 2015.
Over the years the family has relied on charity the MPS Society, which supports those with the condition.
But with isolation and anxiety increasing during the pandemic, the charity has been forced to find new ways to connect to its community.
‘The pandemic has had a profound impact on the mental health and wellbeing of our community and we have received a significant increase in anxious queries about the impact of the crisis,’ the charity posted on its website.
‘The pandemic has forced us to find ways to connect our community virtually and we would like to expand on this going forward.’
The charity is now planning to roll out a range of innovative new mental health and wellbeing services in 2022 which include mindfulness courses, workshops, counselling sessions and support groups.
The society hopes to raise £15,000 to help others with their mental health as part of their Big Give Christmas Challenge.
The support of the charity has been a tower of strength for Maddi’s sister Jorden, 26.
She said: ‘Over the years our family has relied on the MPS Society. This small charity 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 always support from the advocacy team.
‘I joined the workshop because it seemed like a good way to meet other adult siblings and share similar experiences. In the workshop we shared our feelings and it was reassuring to hear that others understood the challenges and the positive aspects of being a sibling.
‘I help my parents look after Maddi and 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.
‘It was a relief to share that experience with others. The workshop appealed to me as it was less daunting to meet new people online.’
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To help, people need to make a donation between midday on Tuesday November 30 and midday on December 7.
Donations will be matched pound for pound at no extra cost - meaning donations will be worth twice as much to the MPS Society.
To donate go to www.mpssociety.org.uk/christmas between the dates.