The family of an “inspirational” 14-month-old girl are asking for support in their appeal to buy a medical vest that would vastly improve her quality of life.
Brave Abbie Venner, who was diagnosed with the life-limiting illness cystic fibrosis just days after birth, has to undergo a daily physio routine to prevent a thick mucus building up in her lungs and internal organs.
Her parents, Laura and David Venner, of Drighlington, are trying to raise £8,000 for a Hillrom airways clearance vest, not available on the NHS, that would compress her chest back and forth in a pain-free way and reduce her high risk of infection.
Mum Laura, 32, who also acts as Abbie’s full-time carer, said her daughter was forced to spend the first five months of her life in the neo-natal and cystic fibrosis units at Leeds General Infirmary after her bowel perforated and burst.
“You expect pregnancy to be full of hopes and dreams, but I was poorly all the way through with Abbie, and I think my body must have known something was wrong,” she said.
“When she was born, I couldn’t even bring myself to put my hand on her head because I was afraid I would hurt her. She just looked so poorly, a tiny little bundle covered in wires and tubes. It used to tear me in two having to leave her in hospital every night.”
Cystic fibrosis occurs when two parents carry a faulty gene which causes a build-up of too much water and salt, which combine to form a thick sticky mucus in the lungs.
If Abbie, who has had five major operations on her bowel since she was born, gets an infection, it generally means a two-week hospital stay on intravenous antibiotics.
But since a gastrostomy operation in October last year, where a feeding tube was inserted directly into her stomach, Abbie has avoided any hospital stays.
“It’s a cliche, but an emotional rollercoaster is the only way I can describe it, one day you’re and the next you’re down,” said Laura. On a good day she is happy, smiling and playing, but we have to do the physio on her chest to release the mucus and it’s very uncomfortable for her. She screams because it’s painful and not nice.”
Laura says David often sleeps in the nursery to make sure Abbie is breathing ok during the night, and sister Sophie, ten, also helps her as a young carer.
“The vest would make her life so much easier, and just allow her to be normal,” said Laura. “She could play and have her physio done without having to be pinned down.”
Laura said that alongside the appeal for the vest, the family also want to help raise public awareness of cystic fibrosis, as despite being the most common life-limiting illness in the UK, she doesn’t think it has as high a profile as some other conditions.
“Abbie is an inspiration to all the family, and to everyone that meets her,” said Laura. “She makes people’s hearts melt.”
To help Abbie’s appeal, donate at www.justgiving.com/abbie-Venner, or use the text code VEST71 to donate to 70070.