AN IPSWICH couple is campaigning to raise awareness about a rare chromosome disorder which claimed the life of their 10-month-old daughter.
Arwen Moodie died in 2010 as her parents Naomi and Cam watched her take her final breaths after suffering an infection after surgery to correct a heart defect.
However, it became clear four months after her death that Arwen had Drayer's Syndrome, an extremely rare chromosome disorder, with only eight recorded cases worldwide.
"They kept telling us there was a chromosome problem but we never found out what it was. They had done tests and it wasn't until after she had passed away (we found out)," Mrs Moodie said.
Drayer's Syndrome lowered Arwen's immune system.
The ordeal was unexpected, with pregnancy scans showing no trace of abnormalities.
"When we had Arwen I had a completely normal pregnancy; it wasn't until she was born that they said she wouldn't make it through the night. She did, and she kept making small improvements throughout her life," Mrs Moodie said.
Arwen's health continued to improve until she was 10 months old. In a desperate search for information Mrs Moodie, 27, came across a UK charity called Unique, a support group for chromosome disorders.
The couple has set their sights on arming other families who find themselves facing the same situation with information about what lies ahead by creating The Arwen Leigh Foundation.
"Most, if not all, families go through the 'how did it happen?' and 'what does it mean for the future?'.
"Cam and I, we have always tried to, if we find anyone else who has found themselves in the same situation, we always put them on to Unique."
They created the foundation as the anniversary to Arwen's passing approached last year.
"We started off by asking people to plant a tree and people started to do it for her birthday and this year we are hoping to make it bigger and better," she said.
This year they are selling green wrist bands to raise money for Unique.
Mrs Moodie is pregnant again and they are expecting a girl.
For more information go to www.thearwenleighfoundation.org.
Update your news preferences and get the latest news delivered to your inbox.