A Sussex woman is hosting a fundraising wedding fair for her best friend who suffers from an incurable illness.
Jennifer Jelley-Ottley, owner of Sussex Bridal Services in Hampden Park, is hoping the event will raise awareness for her terminally-ill friend Mira Adams, 42.
Mira has an extremely rare condition, not yet recognised in the UK, called Retroperitoneal Lymphangioma – which means she has an inoperable cyst on her back which is crushing her vital organs.
She is believed to be only the 187th person diagnosed with it – and the only person alive who has it.
Despite this, Mira has not lost her love of life and is determined to make the most of her time. She has a bucket list of places she wants to visit, such as Barbados where she got married, and says it is her dream to meet Robbie Williams or Peter Kaye.
She said, “I can die at any time – I have just got to enjoy myself and carry on fighting.
“It would be nice for the illness to be recognised. It took me 13 months to get diagnosed.”
The wedding fair, taking place on February 26, is raising money for The National Organisation of Vascular Anomalies (NOVA), which researches illnesses like Mira’s.
“It’s going to be an alternative wedding fair,” said Jennifer, “We are going to have men in drag on the catwalk. It’s going to be a lot of fun!”
Jennifer says the pair have known each other for four years.
“We just got on, we connected.” She said, “You know when you meet people and it’s like fate?
“We are trying to raise awareness, get her noticed, and get her bucket list done.
“I also want to continue raising money after Mira is gone.
“I want to look into making a UK-based charity for people like Mira.”
The fair at Sovereign Harbour Yacht Club, offers free entry, and opens from 11am-3pm. There will be a bridal catwalk show, live music, canapes, an auction and local wedding suppliers.
The National Organization of Vascular Anomalies (NOVA) is a non-profit, voluntary organisation whose mission is to provide assistance to patients and their families affected by vascular anomalies including hemangioma, vascular malformations, and related syndromes.
For more information, visit www.novanews.org
For information about the wedding fair, contact Sussex Bridal Services on 01323 503071 or visit its Facebook page.