A fundraising drive is getting under way to help a very special little girl enjoy her first holiday.
Falkirk’s Hollie Shaw (4) suffers from tufting enterapathy and central incisor syndrome, a combination of conditions so rare that her family believe she could be one of only a handful of children in the UK to have it.
It means that Hollie’s digestive system doesn’t work because of intestinal failure, and she needs around 14 hours of treatment every day.
But Hollie’s mum, Amy Martin (23), and her close family are planning a whole range of money-raising activities to buy a medical bed and a special buggy to hold her equipment and pumps so she can have the freedom of a holiday.
Amy said: “She’s a wee diamond.
“It would be great to take her away, just somewhere quiet like a log cabin.
“She’s never really been away, only to CHAS’s Robin House in Balloch.”
Hollie was in hospital for the first 10 months of her life receiving a complex course of treatments and medications.
Doctors have said she will have a shorter life expectancy, and she is now fed directly into veins in her heart.
Amy said: “She’s had so many operations, I’ve lost count.
“When they are so little, it takes them longer to get over it.
“It has been difficult, but the hospital staff have always been so good at explaining everything and they always suggest ways to make things a little better.”
Amy receives help at home from carers who monitor Hollie through the night, and also carers who help with a strict routine of sterilising equipment.
She said: “Infection is the biggest risk for Hollie.
“Having the extra help and care is great, and I have a lot of family support.”
Amy’s cousin Lauren Adam says close family are now getting organised to hold fundraisers to gather enough cash to buy Hollie’s equipment.
Lauren said: “We’re planning a few things, including a friend who’s doing a bungee jump in New Zealand.
“We’re hoping to round it all off at the end of the year with a special Hollie ball.”
Amy added: “Hollie’s great.
“She loves reading books, and she loves going to nursery.
“I can’t believe she’s going to school in August.”