Arliya-Leigh Bull was only a few hours old when her parents were told a plan was being implemented for her to “go home to die”.

But Arliya-Leigh, who has Hypoxic Ischemic Encephalopathy (HIE) – a type of brain damage caused by a lack of oxygen at birth, celebrated her first birthday last week at Rainbows Hospice for Children and Young People. Although it was a time of joy for her parents, Laura and Reece, the occasion was tinged with sadness as Arliya-Leigh’s first birthday could be her last.

“The doctors are shocked at how well she is doing,” said Laura Bagworth (22). “She just carries on each day. They still say her life expectancy isn’t great, I feel like I am living on borrowed time. We live each day as the last with her and we celebrate that time making as many memories as we can. To get to a year is something we never thought we would see and it is fantastic.”

Laura was anesthetised during Arliya-Leigh’s traumatic birth. When she came round she was shown photos of her baby and told she was in Intensive Care.

“I demanded they wheeled me to her in my bed and when I saw her I just sobbed. She was covered in wires and tubes, you name it, she had it,” she said. “I had lots of meetings and a plan was made to get her home as quickly as possible. She was basically coming home to die. Doctors said I needed to prepare myself, but there is no way you can prepare for something like that. We brought her home and it felt like we were just waiting. They said it would be within weeks.

“But she just kept proving everyone wrong and getting stronger. One of the hardest things was that she didn’t cry until she was five-and-a-half weeks old. Not one sound. I kept asking if she would cry and I spent the whole time begging for her to cry. Two days before she came home, she found her voice and it was the best sound.”

Arliya-Leigh’s condition means she is tube fed as she is not able to swallow and does not have a gag reflex. She has frequent seizures and two to three muscle spasms a minute, for which she is on a range of medication.

For Laura and Reece (21), Laura’s five-year-old son Junior and stepson Tyler (two), Rainbows is an “incredible” place. “We came to Rainbows when Arliya-Leigh was two months old and we loved it,” said Laura. “It is so good in so many ways. We feel so supported by all of the staff who help us so much.

“Coming to Rainbows gives me a bit of respite. I can go to sleep without having to worry about getting up to give Arliya-Leigh her medication etc.

“Junior loves the pool and he says Rainbows is like coming on holiday, which it really is for us. Rainbows is a really big part of our lives now. When the time comes that Arliya-Leigh passes away, I want it to be at Rainbows.”

Laura describes the last year as traumatic and was very emotional about Arliya-Leigh reaching such a significant milestone. For her birthday, a sensory room was created at their Langley Mill home, with friends and family members buying items for it.

“For us, we just didn’t know what was going to happen,” she said. “From one minute to the next, we were, and still are, living in limbo. We have been told that all it will take is a bad chest infection or a seizure and she will be taken from us. But for now, we are just going to appreciate every second we have with her.”