King’s College Chapel to light up ‘green’ and help raise awareness of rare condition
A Cambridge family is hoping to spread awareness about a rare Chromosome deletion called Phelan-McDermid (PMcD) Syndrome which affects their 10-year-old daughter Olivia by getting King’s College Chapel to light up in green on October 22.
Andy and Jenny Kulina are trying to raise awareness of PMcD to help drive research with October 22 being hailed as International PMcD Awareness Day.
On that day, PMcD families try hard to get famous buildings illuminated green to get some media coverage and this year, Kings College Cambridge has kindly offered to illuminate its iconic Chapel on the evening of October 22.
PMcD syndrome affects more than 2,700 people worldwide and by raising and spreading awareness it will mean more opportunities for research, treatment, and improved outcomes for those affected by it. It's estimated that one per cent of people with autism have PMcD, but many are undiagnosed.
There is no cure or treatment specifically for PMcD and sufferers are rarely ever able to live independently. PMcD symptoms vary, but they often cause a wide range of medical, intellectual, and behavioural challenges.
Dad Andy said: “PMcD affects Olivia in several ways. She is non-verbal and has severe learning difficulties. PMcD has affected her swallow and digestive functions, so she needs help when eating and drinking to prevent choking or aspiration. She is mobile, but PMcD affects her stability and gait.
“There is no known cure or treatment, but that is why we are making King’s College Chapel “shine green” – to raise awareness. With awareness comes research and potentially, a cure. Because the chromosome deletion has been identified and is so specific, there is hope that some of the recent discoveries in gene editing might be able to be applied to help treat or cure PMcD.
“The frustrating thing is, Olivia can’t tell us how she feels. We’d love to be Olivia for a day to try to understand her world. What we do know is that she is persistent, strong-willed and kind. She is slowly figuring out how to communicate without words and you only need to spend a short amount of time with her to fall in love with her.
“As parents, of course, we are experiencing parenthood different than most of our friends, so we sort of learn things on the fly. Olivia needs one to one attention at all times, as she is always at risk of doing something unsafe like putting the wrong thing in her mouth.
“Having a big sister with special needs is also a huge challenge for our daughter Sophia (7). It’s tough when it seems like your older sister is getting all of the attention but Sophia has been a superstar. If you do visit the event website www.shinegreen.co.uk please do click on the Olivia and Sophia tab to watch an amazing video Sophia made to explain more about Olivia to her classmates!
“We are involved with a larger group called the Cambridge Rare Disease Network where we can share information and find support from other parents in similar situations to our own. We’ve also had amazing support from Chris Baker and the team at The Castle School and Dr. Alison Sansome, head of the Child Development Centre at Addenbrooke’s.”
Families and advocates of those with PMcD around the world are raising awareness the week of October 22 by “shining green” everything from homes to bridges and other local landmarks. Previously, iconic landmarks such as the Sydney Harbour Bridge and Empire State Building have been illuminated green as a part of this campaign. This year, King’s College Chapel, Cambridge will be the first UK landmark to “Shine Green” on October 22.
There will be a “lights on” ceremony at 18:30 on October 22 at the front of King’s College Chapel, King’s Parade, Cambridge. Local businesses are getting involved. Jack’s Gelato will be serving a new “Shine Green” flavour, Smokeworks are offering 50 per cent off their gourmet hot dogs and Brewdog Cambridge will launch a “Shine Green OG” beer, named Olivia.
Andy adds: “There are many people to thank for enabling us to pull off illuminating Kings on October 22.
“Jack’s Gelato, Brewdog and Smokeworks are all putting special ShineGreen offers on with proceeds going to support PMcD; Bob Black Construction made a generous donation to cover some of the costs of the event; Kings College of course for allowing us to make their chapel ShineGreen on the night; BBC Look East and BBC Radio Cambridgeshire for helping to promote the event. Jeremy Sallis will be the MC. The Mayor’s office of both the City of Cambridge and the Cambridgeshire/Peterborough Authority are also supporting us with special declarations and promoting the event.”