Spalding toddler Mia Clucas has helped national disability charity Sense raise more than £80,000 after being chosen as the face of its 2018 Christmas appeal.
Two-year-old Mia was born with two extremely rare genetic conditions – Coffin-Siris Syndrome and PCDH12 – which left her with a malformed brain and have rendered her severely disabled.
Her conditions cause epilepsy and severe developmental delay, while also affecting her motor skills and muscle tone; meaning Mia is unable to feed herself and it’s unlikely that she’ll ever be able to walk.
The youngster also has a visual processing condition which means that, although her eyes work perfectly well, her brain is unable to process the information. She can distinguish between light and dark – but can’t see detail, meaning that going into darkness can be distressing for her as she struggles to understand what’s happening.
It’s because of her visual problems that Mia’s parents Andrew and Nicola Clucas, who are both directors at the Spalding Voice, were offered the chance to take her to a group session at Sense’s Manor Lodge Facility in Market Deeping.
The Mini-Magpies group, which is run by family and support worker Nicky Burgess, allows Mia and other children the chance to make use of the hydrotherapy pool and sensory room, while Andrew and Nicola are also able to garner advice from staff and parents who are dealing with similar issues.
Dad Andrew said: “Mia seems to bring the best out in people – both Nicola and I are very proud of her. We’ve been very fortunate to have great support from our family and friends, who have helped raise money to ensure Mia is able to have the best life possible.
“So it’s nice that Mia is able to help Sense raise money for other children to ensure they have the best chance of thriving despite their disabilities.
“Going to Sense was a massive part of helping Nicola and I accept the complex situation we are facing as a family. The pool relaxes Mia’s tense muscles and allows her to enjoy the water, which isn’t the case in the cooler pool.
“She often comes alive in the sensory room and we can use the specialist equipment Sense has access to.
“Speaking to other parents and sharing information is also one of the best things about Mini-Magpies. Be it getting advice or passing it on yourself, it’s such a great environment for parents that have children with additional needs.
“Being a parent of a child with additional needs can be a very lonely experience, but the group is incredibly welcoming and it’s amazing to see how quickly people feel at home there.
“Sense has played a part in helping us move out of the darkness and enjoy Mia for who she is now, which is a gift money can’t buy.”
Sense has been delighted with how the appeal has gone so far, admitting that Mia’s story has helped raise vital funds.
The charity is targeting more than £100,000 for the appeal, which will help its mission to support children like Mia all over the nation.
Hollie Kingsland, an individual giving officer with Sense, said: “As the star of our 2018 Christmas Appeal, Mia has helped raise an outstanding amount to support children with complex disabilities.
“We asked supporters to ‘light up Christmas’ for children like Mia, and her story has clearly touched the hearts of many.
To donate, visit www.sense.org.uk/support-us/donate/christmas-appeal/