SHE’S a little miracle.
Rubi Saunderson, from Killamarsh, defied medical opinion to simply survive.
She was born weighing just 5lbs 7oz and struggled to eat and breathe before doctors discovered a large piece of her diaphragm missing.
Parts of her abdomen, including her stomach, intestines, liver and spleen had gone through the hole in her diaphragm and into her chest.
Rubi had to have an operation to save her life and was then diagnosed with the rare genetic condition Trisomy 18, also known as mosaic Edwards syndrome.
It means she has an extra chromosome 18, instead of the usual two copies, in most cells in her body.
Rubi – one of only six children in the country who suffer from the condition – is fed through a tube in her tummy.
She has a poor immune system, which means she often gets ill from bugs or viruses.
She doesn’t speak, mainly because of deafness in her left ear and partial hearing loss in her right ear and communicates through facial gestures, sounds and Makaton, a sign language specially created for very young children.
Doctors told her parents Darryl, aged 46, and Julie, 39, she had a short life expectancy and would never be able to sit up or walk.
She also developed e-coli, got meningococcal septicaemia and at 13 months had another life saving operation, this time on her stomach.
After doctors diagnosed Rubi’s condition they told the couple it was a miracle she was still alive.
“Julie had a little cry at the news and I tried to take in what we had just been told,” says Darryl. “Our precious daughter, who had been through so much suffering already, was destined for a short life with no real guarantee of any level of quality. It was a very hard, very dark, very sad day.”
But Rubi is now doing so well she is able to attend Killamarsh Infant School with brother Luke, nine.
Darryl said: “Every day she makes us proud with her amazing advancements. She’s always smiling and is constantly happy. She’s wonderful and we feel blessed to have her.”
Rubi, six, is helping to raise awareness of genetic disorders with the UK children’s charity Genetic Disorders UK by taking part in Jeans for Genes Day when people are invited to wear jeans to work or school on Friday, October 5, for a donation.
- Log on to www.jeansforgenesday.org for details.