A FUNDRAISING campaign has been launched to help a Musselburgh family make memories as their young daughter waits for a multi-organ transplant.
Four-year-old Lexi Nicolson, who has Ultra Short Bowel Syndrome, has to get all her nutrients via tubes as she cannot absorb them from eating.
While in the womb, Lexi suffered gastroschisis – a birth defect of the abdominal wall – which meant that some of her bowel protruded through a hole in her abdomen.
As a result of this, she was born with just 10 centimetres of bowel.
Her dad Jamie, 26, and mum Naomi, 25, of Eskview Road, gave up work to care for their daughter, who was in the Royal Hospital for Sick Children for three months.
Brave Lexi was then transferred to a children’s hospital in Manchester for surgery to reconstruct her bowel, undergoing six operations to lengthen it over the last few years.
The family spent five months there, living in accommodation run by the Ronald McDonald House charity which provides a “home away from home” for those with children at NHS hospitals.
Jamie told the Courier: “Lexi eats but she doesn’t absorb the nutrients because her bowel is so short. It is just maintaining her weight but she is not gaining weight.”
Lexi receives all her nutrients, such as vitamins, fats and dietary minerals, via tubes, called a central line, into a major artery to her heart in what is called parenteral nutrition (PN).
But Jamie said Lexi’s vein access was now limited. “She is now on her very last line,” he said.
“That is the reason we are now on the transplant list. All her veins are blocked, so when the PN goes in, it’s not getting about her body. It is partially getting through.
“Our aim now is to keep her medically fit because if she ends up ill, she will be suspended on the transplant list and have to wait. That is time we can’t afford to lose.”
Lexi’s immune system is low and she has suffered ‘line’ infections which have also caused set-backs.
Jamie said that Lexi needed a multivisceral or multi-organ transplant, involving her small bowel, liver and stomach, and had been assessed for surgery at Birmingham Children’s Hospital.
He said: “There have only been just over 2,000 small bowel transplants worldwide, with around 93 carried out at Birmingham since 1993 when the programme began.”
The family said that currently 41 of the patients attended follow-up clinic appointments.
For the time being, until they get the phone call to say an organ donor is available, they want to make memories with Lexi and her younger sister Maya, aged two.
Jamie’s cousin Courtney Boyle, from Tranent, has set up a GoFundMe page ‘Making Memories with Lexi’ in the hope of raising £2,000 to enable her to “live life to the full” while she awaits a transplant. Thirty-eight well-wishers have raised £1,400 in just five days.
Naomi, who is orginally from Macmerry, said: “We just want to make as many memories as possible.”
High on their wishlist is a trip to Flamingo Land in North Yorkshire.
Jamie added: “We want to do normal things that we haven’t been able to do as we have never been out of hospital this year – just to go somewhere, to have a break and get Lexi away from it all.”
Despite all she has been through, Lexi, who loves Troll dolls, is “always happy”, he added.
The family also visited the children’s hospice Rachel House last week.
Jamie said: “We don’t know what is round the corner. The prognosis is poor for Lexi.”
To donate, go to www.gofundme.com/3h65t7s