Thornaby mother raises awareness of rare condition after daughter's death

Nancy was diagnosed with the condition when she was two months old

A mother is raising awareness and funds after her nine-month-old daughter died having been born with a rare genetic condition.

Lisa Rogers' daughter Nancy was diagnosed with Smith-Lemli-Opitz syndrome (SLOS), a development disorder, when she was two months old.

She said her daughter brought "so much love" to her family she wanted to make sure others knew about it.

She has already donated £900 to the University Hospital of North Tees.

Ms Rogers, from Thornaby, said: "Doctors told me Nancy would never be able to support her head or sit alone. They told me she would never smile or roll over but she did all of them things with my encouragement.

"I never gave up on Nancy and I want people to know there is hope for people with this condition."

Nancy was born in September 2020 by caesarean section weighing 6lb 3oz.

Ms Rogers was originally told her daughter would only survive for 48 hours

The 40-year-old said: "When she was born, she didn't cry. She had difficulty breathing - she had a wheeze.

"The only thing I remember saying was that she only had four fingers - she didn't have her little finger on her left hand."

Doctors on the special care baby unit found she had problems with her heart and kidneys and she could not suck or swallow.

Nancy was transferred to the paediatric intensive care unit at the Freeman Hospital in Newcastle, where a doctor asked if she knew how poorly she was.

"He told me to take her home to meet her family because she won't be here in 48 hours. They'd done all they could and we just had to wait and see now," she said.

Two months later Nancy was diagnosed with SLOS, a condition which affects multiple parts of the body, including internal organs, growth and intellectual development.

Ms Rogers said: "We had the best nine months and now I'll make sure other people know about the syndrome and let them know there is help and they are not alone."

Ms Rogers has donated blankets and clothing to the special care baby unit at the University Hospital of North Tees

Nancy died from heart failure and sepsis in July.