June 19 2013 Latest news:
by Safira Ali, Senior reporter
Friday, January 11, 2013
»A couple whose baby daughter died from a rare genetic condition have raised £40,000 for the hospital department that cared for her.
Mark and Catherine Rayner, who are expecting another baby, have thanked more than 200 people who donated and helped raise £20,000 of that total in just one day.
The couple, from Shenfield, said the fundraising had helped them overcome the incredibly difficult loss of their daughter Charlotte.
She was born with a rare genetic disorder called Edward’s Syndrome, also known as Trisomy 18, which affects about 30 babies a year in the UK.
It often leads to severe cardiac damage, including large holes in the heart, fused aorta and pulmonary arteries.
The syndrome is totally random in its occurrence and is not detected by any of the usual antenatal screenings. Charlotte died peacefully with her parents by her side at the Neonatal Intensive Care Unit family room at Basildon Hospital in June.
The couple, who have a three-year-old son Harry, opened a JustGiving fundraising page with the aim of raising £30,000 for a new incubator for the neonatal care unit.
Mark, 44, said: “We came to the hospital the day after Charlotte died because Catherine wanted to see her. I wanted to go in but I couldn’t bring myself to. I sat in the car and called the fundraising office. By the time Catherine returned, I’d opened the JustGiving page in Charlotte’s memory.”
Mark, who also has two daughters Louise, 13, and Gabrielle, 10, is a director of a syndicate at Lloyd’s of London and word quickly spread among his business contacts about his fundraising efforts.
“Our friends and family have given such amazing support,” he added. “We raised £20,000 in one day and had donations from across the world, including from people who we don’t even know.
“It definitely helped us with the grieving process as we know we will be helping other babies and families who need it.”
The couple are now looking forward to this year as Catherine is 20 weeks’ pregnant and expecting a girl.
Mark said: “Going through something like this certainly touches you and makes you realise what is truly important. It changes your perception of things. It’s not something you think you’ll have to go through.
“You always think it’ll happen to someone else. But when you see the babies at the NICU – and they are all so tiny – you realise how many families go through difficulties.
“Charlotte was only with us a short time. But Catherine and I take some comfort from the fact that we were able to meet her, along with our family and close friends.”
n The Rayners JustGiving page remains open. Visit www.justgiving.com/Mark-Rayner1