Catherine Donlon, 40, and husband Mark, 46, were trying to have another child for four years.

But during their four-week scan, they discovered that their unborn baby was suffering from encephalocele, a rare type of birth defect that affects the brain.

Doctors recommended a termination, insisting it would be unlikely for their child to survive the pregnancy. The devastated couple refused to give up their daughter and went on with the pregnancy.

“Mark and I were determined to give her a chance,” Ms. Donlon said. “The doctors said she would probably either die in my womb or shortly after she was born, but I’d tried for so long to have her that it just wasn’t an option for me.

I didn’t want to be the one to end her life.”

The parents, who also have a 9-year-old daughter Emily, were told that if their baby makes it through pregnancy, there was a high chance that she would die shortly after birth.

Determined to keep their baby, the couple were referred to Saint Mary’s Hospital in Manchester. “We had a plan in place that I would have a C-section and the team would be ready to save her life. We wanted to do all we could to help her,” Ms. Donlon said.

Their little girl Alana was born on March 15, 2015, weighing eight pounds and 5 ounces. She was immediately taken to intensive care and underwent a 7-hour operation to remove the external part of her brain. She was only 8 days old when the medical procedure happened.

A week later, she was already allowed to go home. However, her condition has left her severely disabled. Alana registered blind, can’t walk, and suffers from seizures every few weeks. Her parents also said that she sometimes harms herself by cutting her face with her nails.

“She needs full-time care and will for the rest of her life,” Ms. Donlon said. “She is registered blind, has significant brain damage, is physically and mentally disabled, and doesn’t walk. She can’t sit up by herself, but has just learnt to roll over.

She started having seizures about six months ago, which happen every few weeks, but we are hoping that we will be able to get medication to bring them under control.”

“She may have her difficulties, but she’s a miracle baby and we adore her,” Ms. Donlon also said.

“Now she has started at a specialist school, though, and she is doing well. She enjoys it and it’s great to see her with other children. She may have her difficulties, but she’s a miracle baby and we adore her.

We just do what we have to do. We are a family and we love her. Her sister Emily loves playing with her, too.”

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