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My daughter died suddenly in her sleep with a rare disease

A mother has been left heartbroken after her daughter died in her sleep last week.

Danielle Marie Lewis, 20, died suddenly at home a few years after being diagnosed with a rare disease.

Her devastated mother Kirsten said she suffered from Gardner syndrome – with five of her six children now diagnosed.

It is a rare genetic disease with reduced life expectancy, resulting from familial adenomatous polyposis.

This is when a person develops more than 100 colon polyps (growths), but people with Gardner syndrome can have these growths anywhere in the body.

This can dramatically increase the risk of developing cancer, with patients often dying tragically young.

The apprentice childcare worker was operated on two years ago to remove tumors in the breast and abdomen.

And for eight months, she suffered from “severe” sleep apnea and fell asleep all over the place.

She had received a referral for a sleep study, but died a few days later on March 3.

Kirsten told Plymouth Live: ‘My husband is a carrier, as is his mum, and now he’s passed it on to my kids.

“It is this gene that causes desmoid tumors to grow. They can be sporadic and can develop anywhere on the body.

“My husband’s mother underwent major surgery to remove them. But she’s 77, she’s had a full life. But she lived with the disease.

Danielle Marie Lewis suffered from a genetic disease for several years.
Kirsten Lewis/BPM MEDIA

She recounted the heartbreaking morning she found out her daughter had died in her bed.

The mum said she was asked ‘to help wake up Danielle because she won’t wake up’.

She added: “I walked into her room and knew she was gone.

“I screamed for help but I knew in my heart that she was gone. I have never felt so much pain in my life. My beautiful baby girl was gone.

“Danielle was only two months away from being fully qualified to become a childminder, a job she really loved and loved.”

She revealed that she was told Danielle had COVID when she died, but the mother does not believe that was her cause of death.

The family has set up a fundraising page to help with funeral costs.

This story originally appeared on The Sun and has been reproduced here with permission.

New York Post

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