THE parents of a little girl who suffers from an extremely rare illness which means she cannot eat have told of their daughter’s brave battle against the potentially life-threatening disease.
Four-year-old Ruby Skye Johnson suffers from the rarest form of chronic intestinal pseudo-obstruction which affects the movement of contents through the intestinal tract and any food she eats results in her being violently ill.
Since she was born, Ruby has been in and out of hospital but in recent months has begun to enjoy life thanks to a technique which means her devoted mum and dad can administer vital treatment at home.
And this week she jetted on the holiday of a lifetime to Disney World, Florida, organised by the Make a Wish Foundation.
Her mum Lucy Exton (28), a former pupil of Brunshaw Primary School and Walshaw High School, said: “The scans I had when I was pregnant showed there was something wrong in Ruby’s stomach but doctors said they couldn’t see what it was until she was born.
“The delivery was fine but the next day Ruby started vomiting and they took her to intensive care for a few weeks while they tried to figure out what was wrong.”
When she was two, doctors diagnosed Ruby as having CIPS and she was constantly being admitted to hospital to go on a drip because she was dehydrated.
Surgery at Great Ormond Hospital, London, in January last year saw Ruby hospitalised for eight months. But now, her condition has improved and she has started school in Sleaford, Lincolnshire, where she lives with her mum and dad Alan Johnson (27).
After Ruby was born, the family wanted to move back to Burnley to be closer to Lucy’s mum Elaine Ramsey, who lives in Brunshaw, but had to stay in the Midlands to be near Ruby’s doctors at the Queen’s Medical Centre, Nottingham.
As she cannot eat, every night Lucy and Alan, who are among only a handful of parents trained in the procedure, attach a drip to Ruby so she can be given all the vitamins and nutrients she needs. But she is constantly hungry and her parents have to ensure they do not give in to her requests for food, except for the odd packet of crisps.
“It’s torture. A lot of children who have this condition don’t have the hunger but Ruby does. It’s heartbreaking. I’m her mum and I’m the one who looks after her. She’s always hungry,” said Lucy.
There is no cure for CIPS and Ruby’s parents have been told by doctors the nightly drip may lead to liver failure and she may need a bowel transplant when she is older.
But for the moment her parents said they have never seen her so happy. “She is unbelievable,” said Lucy. “She’s so brave and I’m so proud of her, she’s the happiest little girl.
“When you’ve been through something like that you just live life to the full.”
Alan added: “Since she started having the drip at night she’s got so much more energy. She’s a different child.”
Family and friends are raising money for the Pseudo Obstruction Research Trust charity, which helps fund research into CIPS.
A curry evening will take place at the Usha Indian Restaurant in Rossendale Road, Burnley, on November 10th. Tickets are £15 and to book call Katie Sawley on 07875 441555.