Mother of girl with connective tissue disorder to don cape for 10k to find cure

The mother of a girl with a connective tissue disorder is to don a cape for a 10k which ends at Downing Street in a bid to find a cure within her daughter’s lifetime. Bonnie Jackson lives in Chislehurst , south-east London , with her nine-year-old daughter Mia, who has Vascular Ehlers-Danlos Syndrome (Veds), the most severe form of Ehlers-Danlos Syndrome – a condition which affects blood vessels and internal organs and can cause them to split open. Driven by her mission to ‘find a cure’ for the disorder, in the space of 18 months the 34-year-old has raised more than £50,000 for charity Annabelle’s Challenge which specialises in Veds, describing it as her ‘light’. She is also part of a community called MumsOnAMission, which is made up of Ms Jackson’s friends who are helping the mother and daughter with their aim to find a cure. Her next fundraiser – the ASICS London 10k – is taking place on July 9. ‘During the 10k race on Sunday, I will be wearing my MumOnAMission purple-crowned cape, in line with the charity colours, which was made by a friend,’ the trade finance worker told the PA news agency. ‘I’m running with my friend Lauren, a fellow MumOnAMission, and am looking forward to finishing, raising awareness, taking in the sights and showing Mia that we’ve done it. ‘I’m going to go around the streets of London and finish at Downing Street – and hopefully one day get in there to make positive changes. ‘I’m going to find a cure for my daughter. I have to find a cure for my daughter, and I’m going to achieve it within her lifetime.’ Ms Jackson said it took nearly seven years to get a diagnosis for Mia, despite her displaying symptoms at five months old, with the condition affecting her on a daily basis. ‘Day to day she lives with crippling fatigue and crashes with exhaustion,’ she said. ‘I call it a crash because her body physically crashes to the point where she literally can’t move. ‘She suffers with aches and pains, extreme easy bruising, and her veins can swell and rupture, so they basically break and tear very easily and they bleed under the skin.’ Ms Jackson added that these are known effects of the condition, but ‘what you don’t see is that it is a completely invisible illness’. ‘You can’t see fatigue or aches or pains and she looks like the most beautiful, wonderful, normal child. ‘This is why I’ve been fighting for years – to raise awareness and be someone else’s light because you feel so alone pre-diagnosis.’ She added that another difficulty of having an ‘invisible illness’ is that it can be tricky to get equipment. ‘The NHS only offer one type of wheelchair – unless they cannot physically walk, they won’t be offered an electric chair, and the condition has a big effect on mobility and people are then forced to go and privately fund what they need to fit their needs,’ she said. Mia has been very involved with raising awareness for the cause. Ms Jackson said: ‘Mia recently set up her own charity event called Mia’s Pawfect Dog Day, which was a dog walk and treasure hunt in Chislehurst and raised £2,000, and the mayor came and gave her an award.’ She went on: ‘She’s a keen photographer, so she’s helped me with the social media posts – she’s very particular about what I post – and she’s an amazing creative director. ‘She’s baked cakes for bake sales and she knows that we’re fighting for her and for everyone with this disease, which is like a monster – it creeps up and takes over with the vein ruptures, the fatigue and the bleeds.’ As well as raising awareness through fundraising, Ms Jackson is a trustee and the London co-ordinator for Annabelle’s Challenge and was given an award by the charity in May for bringing in ‘remarkable support’ for the Veds community. ‘I was speechless, really, when I got that award,’ she said. ‘It gives you more fire added to what’s already there.’ Ms Jackson said there has been an ‘incredible team community effort’, with mothers finding solace in the fact that there are others in the same position or wanting to provide ‘donations, kind words and support’. ‘It is so important that people feel like they can come to me, and we are raising awareness because there are an estimated 740 people in the UK with Veds, but only 330 on the Annabelle’s Challenge database, which means there are people out there with this killer disease which do not know about it,’ she added. Ms Jackson cited her friend from work, Charlotte, as a support because ‘she’s been through this whole thing with me’, as well as fellow members of the MumsOnAMission community. ‘And we both said, let’s do this and set up a huge fundraising campaign, which has included 5k runs, bake sales, doing ‘Wear red for Veds’ day, half-marathons, golf days…’ ‘And I’ve met literal angels along the way and I’m so grateful for them.’ Ms Jackson’s fundraising page can be found here: https://www.justgiving.com/fundraising/bonnieandmia? To register your interest for 2024’s ASICS London 10k, visit https://limelightsports.club/event/asics-london-10k-2023