Romford events manager Niki Park will be running the Battersea half marathon next month to raise funds for a boy with an extremely rare condition.
Nine-year-old Ruban Selley from Sidcup has a genetic condition so rare that he is only the fourth person ever to be registered with it in the UK.
Ruban was diagnosed with Syndromic Microopthalmia Type-12 in 2019 via DNA testing as part of the ground-breaking 100,000 Genomes Project.
Ruban cannot stand or walk unaided and has multiple sight issues, leaving him blind in one eye and with just 50% sight in the other eye. Ruban also has Nystagmus which is an uncontrollable shaking of the eyes and Photophobia which is extreme sensitivity to sunlight. Ruban needs regular eye drops for Glaucoma. Ruban has Dysphagia which means he must have all liquids thickened otherwise he will choke. Ruban must also have regular medication to control his muscle twitching from high tone to low tone. Ruban also needs muscle relaxant medication at night to help him sleep.
Ruban has already had the lens in his left eye removed, a three-hour surgery on his skull and spine and must have an MRI every six months to check that his brain is not sinking into his spine. Ruban must also have regular botox injections in his salivary glands and sleep studies to monitor his Central Sleep Apnoea.
Despite all of this, Ruban is a happy and active boy who loves gaming and watching other children gaming on YouTube. Ruban enjoys walking in his frame in the park, swimming and playing with his brothers Mason, 15, and Koah, 4. Ruban attends a mainstream school, and will be starting a SEN secondary school next year.
Ruban’s dad Darren Selley, 44, a self-defence instructor who lives in Kidbrooke Village, mum Becki Chappell, 36, from Sidcup and their friends and supporters fundraise constantly for the specialised physiotherapy, hydrotherapy and specialised equipment Ruban needs to help keep him as comfortable and mobile as possible.
Darren’s girlfriend Niki Park, 35, an event manager from Romford, Essex will be running the Battersea Park half marathon on May 13. She said:
‘Ruban is the true definition of a hero, an inspiration to everyone he meets. It’s a privilege to have him in my life and I want to do what I can to help. Taking on this challenge has also motivated me to get running again! I aim to complete the race in under two hours’.
‘I’m hoping to raise a minimum of £1,000 – people have already been very generous and I’m already almost halfway there. All donations are hugely appreciated.’
Ruban’s family is being supported by Kent-based children’s charity Tree of Hope which helps families fundraise for children like Ruban with healthcare needs and provides charity status to benefit from gift aid, corporate support while also providing donor reassurance.
Tree of Hope CEO Gill Gibb said: ‘We’re really pleased that Ruban and his family have such a supportive network and wish Niki all the best with her half-marathon.’
To sponsor Niki or to donate to Ruban’s fund, visit https://www.treeofhope.org.uk/rubans-wish-to-walk/ or https://www.justgiving.com/fundraising/rubanswishtowalk23
You can also find out more about Ruban at https://www.facebook.com/RubansWishToWalk
