Thornaby mum donates CuddleCot after ‘perfect’ baby girl died from rare condition

A mum who lost her baby girl to a rare condition has donated a CuddleCot to the hospital that cared for her daughter.

Nancy Jo Anne Rogers defied doctors’ expectations time and time again and lived a “perfect” yet heartbreakingly short life. Lisa Rogers had to say goodbye to her nine-month-old daughter after she was diagnosed with Smith-Lemli-Opitz syndrome (SLOS).

Doctors estimated Nancy wouldn’t live longer than 48 hours but she continued to grow and develop. However, she sadly passed away at the University Hospital of North Tees, in Stockton, in July 2021.

Lisa has fundraised for the hospital ever since losing her beloved daughter and she most recently donated a CuddleCot to the children’s ward in her memory.

Image: North Tees and Hartlepool NHS Foundation Trust

Those with the syndrome also have abnormally low levels of cholesterol in their blood. Lisa knows of only two other individuals in the North East with this rare condition – one of whom sadly died.

Nancy surpassed expectations and enjoyed her first Christmas at home, went on three holidays and laughed as she spent time in the water. 

Lisa said: “She had a perfect life. We were told she would never smile or get head support and that she would never sit on her own – she managed all those things.

“She laughed constantly, she started waving and smiling. She developed her own little character.

“All the things we thought she would never do, she did. And more. For a baby that was so poorly, she accomplished more in her nine months of life than most of us do in a year.”

However, on July 5, 2021, she was taken to the University Hospital of North Tees by ambulance where she received treatment after Lisa noticed she was struggling to breathe. She sadly passed away on the children’s ward two days later of heart failure and sepsis, her heartbroken mum said. 

Lisa continued: “I was sat with her the whole time and one minute she was quiet and not moving much, then a few hours later she was lively and kicking her legs, playing.

“I was holding her in my arms and when I thought she’d gone to sleep, I put her back to bed and put her oxygen mask back on her and she just flopped to one side and was gone. She’d died in my arms.

“Nancy made her own decision.”

Lisa is also fundraising to help with a bereavement suite at the University Hospital of North Tees.

She has raised money for the hospital’s children’s ward and special care baby unit that cares for premature or seriously ill newborn babies. She takes blankets and clothes for premature babies in the special care unit and on occasions like Christmas and Easter she has taken presents to these areas of the hospital.

Lisa has also made it her mission to spread awareness of the rare genetic condition that Nancy had. Symptoms of SLOS differ from person to person and some people may have more symptoms than others and symptoms can range from mild to severe.

Read the full article here.

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