Â£50k fundraising target set after baby girl is born with ultra rare genetic condition
All-action auntie Victoria Darby is aiming to raise Â£50,000 for her Cowbit-based niece who was born with an extremely rare genetic disorder.
Mia Clucas, who is the daughter of Victoria’s brother Andrew Clucas and his wife Nikki Clucas, is one of only a few hundred people in the world to have Coffin-Siris Syndrome (CSS).
A random mutation in her SMARCB1 gene means that Mia – now 13 months old – was born with an abnormal brain, which was diagnosed at five weeks.
Her parents Andrew and Nikki, who are both directors at The Spalding and South Holland Voice newspaper, have been told to expect her to have little or no vision and a severe developmental delay.
Mia also has microcephaly, hypotonia and epilepsy as a result of CSS, meaning that reaching basic milestones such as sitting, crawling, walking and talking could take years of physiotherapy and training to achieve – but there’s a strong chance she’ll never get there.
With the diagnosis life-changing for her family, former Bourne Grammar School pupil Victoria decided to set up Mia and Me, a GoFundMe page aimed at raising money – via various events – to help her niece have the best-possible future.
The first of those events was Sunday’s Rutland half-marathon, which saw Victoria and her friends Fiona Evans, Natalia Shaw, Chris Evans, Richard Pope and Tara Watson, who lives in Eye, complete the 13-mile course.
Victoria’s fundraising efforts have already passed £11,000 – and she’s showing no sign of resting on her laurels.
“You never think something like this is going to happen to your family,” said the 32-year-old, who is a solicitor for Kennedys LLP in London. “When it does, it can go one of two ways.
“You can be sad and worry about what the future holds and basically break down, or you can get out there and make a difference.
“I felt so helpless at the beginning of Mia’s life as all I could offer was emotional support – and that just didn’t feel like it was enough.
“I needed to do something big that was going to change Mia’s life. So, I set a goal of raising £50,000 and through sponsorship of running the marathon we have already raised £11,000.
“There are so many other events in the pipeline – including bake-offs, raffles and a ball. There are also a number of companies out there offering amazing support. The response to Mia’s story has been incredible. Friends, family and my colleagues from Kennedys LLP worldwide have been unbelievably supportive.
“I’m so proud of what has been achieved so far – and I can’t wait for the next challenge so we can get closer to the target.
“Mia is such a happy little girl. I was thinking of her little smile as I was running, it kept me going. That smile is what will keep my family going and what will drive me to smash the target I have set.
“With that money, my brother and his wife Nikki can build Mia the life she deserves.”
All of the money raised will help buy equipment for Mia, while parents Andrew and Nikki have plans to build a purpose-built house that will cater for her needs.
Andrew added: “Nikki and I are humbled by the efforts of Victoria and her friends, Mia is incredibly lucky to have such an amazing auntie.
“We can’t thank everybody who has donated enough and the future seems that little bit brighter because of the generosity of so many.”
You can visit Victoria’s page www.gofundme.com/mia-and-me for more information, with all donations very welcome.