A Braunton mum has called for more awareness of rare diseases after a desperate five year battle to get answers to a mystery illness that has afflicted her family.
The Seymour family will be holding their fourth Masquerade Ball at their business SQ Bar and Restaurant in Braunton on February 28, to raise money for the Ronald McDonald House Charities and Rare Disease UK.
Lucy Seymour and her children Harry, Olivia and Jack all have the same rare undiagnosed condition that leaves them ill and triggers severe seizures.
Harry, now aged six, and Olivia, aged four, have both previously had to be put into medically-induced comas for treatment.
After a second hospital stay in 2019, Olivia had to learn to walk and talk again.
Lucy and husband Olly have fought for answers since the mystery condition struck her down in July 2015.
This year, for the first time, they have appointments in London with some of the top neurological specialists in the country.
Lucy, now 33, was a normal, healthy mum when she began to feel unwell in 2015 with flu-like symptoms. She was rushed to hospital after being found unable to move her legs and with slurred speech.
A quest for answers followed, with numerous hospital visits, which became even more urgent when it was realised the genetic condition had been passed to her children.
Lucy said: "There's a lack of awareness for rare diseases and that means there's a lack of support.
"On average, a rare disease patient gets three misdiagnoses before being diagnosed. I know seven people with a rare disease and that's just locally.
"Seeing your three-year-old have to learn to walk and talk again, is quite possibly the most horrendous thing I've ever witnessed, so it became less about getting answers for me and more a mother's desperate attempt to get answers for her children."
The couple have raised more than £27,000 for charity to date and have set up a JustGiving page for donations.
Olly plans to run 221 miles between now and the ball, to represent the distance between Braunton and University College Hospital, London.
Tables for the ball are sold out, but people are welcome to turn up on the night and enjoy the disco, plus a huge raffle with prizes generously donated by countless local businesses.
Tickets are £2 a strip or £5 for three strips, available from SQ Bar & Restaurant, Squires Fish Restaurant or J & S Wensley Newsagents.
Read more about the family's story or donate at https://www.justgiving.com/fundraising/lucy-seymour8 .