A young mother left heartbroken, watching her 6-year-old daughter dying after battling a rare condition she had suffered since birth.
Emily Nixon lost her older daughter Darcy only 5 days after the birth of her baby sister.
Little Darcy was born with a rare condition called VACTERL association, a type of disorder that affects different body systems.
During her short life, she had 20 operations and was about to undergo heart surgery. Sadly, she contracted an infection, which caused her death. Emily and her partner Kristian D’Rosario had only five days to spend with her body in a temperature-controlled room to say their goodbyes.
On January 24, Darcy was pronounced dead at 5 am, which was the same time her baby sister Bea had been born in the same hospital five days earlier. Remembering that hurting day, Emily said:
“Darcy had been sat up talking to me about playing a few hours earlier. Then, in a flash, she was gone. I remember it clearly, I stepped back to let the medics work on her and she was very much aware of what was going on.”
The heartbroken mother shares that little Darcy looked like she knew what was going on.
“She said right beforehand, ‘I want to go home, Mummy.’”
The devastated parents weren’t sure whether she means to go home, as her house, or she wanted to go to heaven. For them this experience was comforting. Even though they knew they had to say their goodbyes, they didn’t want to leave Darcy. Emily said:
“When the hospice mentioned taking her there I was not sure if I could sit with her for five days. I didn’t think I’d be able to do it, but as soon as we walked into the hospice, it felt so calm. I didn’t want to leave at the end of five days. We got to spend time with her and have photographs taken, including of her and Bea to show her when she’s older.”
Emily’s baby daughter Beatrice was born two weeks premature, on January 19. Her early arrival meant the two sisters could meet before Darcy’s death. After the birth, Emily had to spend two days in York hospital with Bea. Darcy had only one special day to spend with her baby sister at home before she was admitted to the same hospital. Kristian said:
“We always say that Bea came two weeks early, so she had the chance to meet her big sister. Darcy was very protective of her. She wanted to be the only one to look after her.”
He also shares that Darcy was very excited to have her little sister with her. When she was feeling good, she was watching over baby Bea, but she didn’t have enough energy left to cuddle or hold her.
“The hardest thing about having Bea is that everything is so bittersweet. Everything that is a first for her is also a first for missing Darcy.”
Despite her terrible disorder, Darcy was expected to make it to adulthood. Unfortunately, her condition started deteriorating in late 2018. One day, in January, she blacked out, and the next morning she died from a cardiac arrest triggered by an infection. Her mother confessed that the most devastating thing is Darcy didn’t get to spend enough time with her baby sister. Kristian added:
“We are determined that Bea will grow up knowing Darcy and how much her big sister loved her.”
After Darcy’s death, her parents have raised more than £3,000 for Martin House hospice care and launched a clothing brand in their daughter’s memory. They shared that Darcy’s zest for life gave them the power and motivation to follow their dreams. They believe that Darcy will live forever through ‘Love Darcy Clothing’ – the brand they created in her memory.
