With maybe just a few months left to live, time is running out for 18-month-old Amelia-Rose Costigan to enjoy her time on earth.
But her parents are determined to create some special memories with their baby girl and give her the chance to share in the everyday activities so many other children get to enjoy.
Amelia-Rose, who requires constant oxygen, is not expected to live past her second birthday on May 14 next year after being diagnosed with Ohtahara Syndrome, a neurological disorder which sees her affected by seizures.
Most children with the condition do not make it past the age of two, meaning time together with their families is precious, and parents Barrie (48) and Sarah (41) of Yaxley are determined to do more with their daughter while they still have the chance.
But they claim to not have been offered much NHS help with funding or mobility for Amelia-Rose, so they hope a crowdfunding campaign will allow the family to buy the equipment she needs such as a powered wheelchair, so they can enjoy some precious days out together.
Barrie said: “Normal children at that age you would be taking to see Father Christmas or to the seaside. We want to do that and cram in as much as we can.
“We just want to build a few memories with her really, but we need new equipment to do that. Two years is the maximum we were told for Amelia-Rose to live. So if that is the case we have six months left.”
Barrie would like to buy his daughter sensory equipment such as bubble lamps, but he said: “I look online and see presents but think ‘how I can afford that’? Everywhere you turn you feel it’s wall after wall. You can’t win and it feels like a losing battle.
“Because she needs 24 hour care we’ve both given up work so you can’t get the money you need. You’re trying to save a little bit at a time to buy Christmas presents and sensory equipment.”
Amelia-Rose was born at the Rosie Hospital in Cambridge and started to have fits and stop breathing.
She spent 41 days at the Paediatric Intensive Care Unit at Addenbrooke’s Hospital where she was placed on a ventillator that would continue breathing for her.
But it took more time in hospital before she received her diagnosis from doctors.
Now, Barrie and the family are looking to make the most of their time with Amelia-Rose without thinking about what might happen to her in the next few months.
He added: “You get asked some pretty bad questions. Last time at Addenbrooke’s we were asked, ‘have you saved up for a funeral?’
“I thought, she’s not enjoyed her life yet and you want me to think about the end of it?
“Every day I wake up and I can’t predict what’s going to happen that day. But one smile a day is enough for us. She’s brilliant. I would not change anything about her if I could. She’s herself, she’s unique. She has her own character. Sometimes you don’t think she’s watching you, then you will get a little grin out of her.”
To donate to the family, visit: https://www.gofundme.com/amelia-rose.