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Grantham woman mourns loss of her husband and children to rare genetic condition

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A woman devastated by the loss of her husband and children to a rare genetic condition has spoken out to raise awareness and pay tribute to her daughter, who died on Christmas Day.

Although Anne Lockwood knew her daughter was “a ticking time bomb”, her sudden passing was still a shock to the family.

Mother-of-two Dawn Walker died at Lincoln County Hospital, at the age of 51.

When Anne’s husband Peter, a Grantham police officer, died unexpectedly in 1997, aged 48, no one knew there was a rare genetic condition behind his death that would go on to take the lives of her son, Gary, and Dawn.

Dawn Walker (6442737)
Dawn Walker (6442737)

It was not until the sudden death of Gary in 2015, at the age of 46, that the family began to suspect a link, particularly as Peter’s mother had also died suddenly following a collapse, aged 48, due to her liver rupturing.

Called vascular Ehlers-Danlos syndrome, it is caused by a gene mutation and affects the body’s connective tissue. In turn, this affects the blood vessels and internal organs, which can cause them to split open and lead to life-threatening bleeding.

This is what happened to Peter. He had collapsed at home and doctors later found his pancreas had haemorrhaged.

Dawn was initially diagnosed 10 years ago with the less serious hypermobility form of the Ehlers-Danlos syndrome, but soon started to suspect she had the more serious form, vascular. When her brother died unexpectedly suspicions were confirmed.

He collapsed while at the home he shared with his mother, in Winchester Road.

Anne, of Manchester Way, Grantham, said: “He took ill one morning with pain in his chest. By the time we got him to hospital there was nothing anyone could do. He deteriorated so quickly.

“It turns out that he probably had vascular Ehlers-Danlos.”

Doctors said Gary had suffered an aortic dissection, where there is a tear in the wall of the major artery carrying blood out of the heart.

Anne said: “When we lost Gary, Dawn said to me on two or three occasions, ‘Mum, don’t be surprised if something happens with me’. I said ‘don’t be silly’ - I thought she was being dramatic but seven weeks later she had the same aortic dissection.”

Thankfully, her husband, Dale, was with her when she collapsed at their home in Branston, near Lincoln, and took her immediately to Lincoln County Hospital.

In a stroke of luck, a female consultant who had been on duty when Gary was taken in several weeks before recognised Dawn and sent her for a CT scan. This showed her artery had ruptured.

A long stay in intensive care at various hospitals followed, including surgery in Liverpool to repair the artery.

Anne said: “The operation saved her life but she was left in a wheelchair.”

A blood test had confirmed Dawn’s suspicions that she had the vascular form of the syndrome.

She was eventually allowed home, but doctors could not say how long she would live for.

Anne said: “The doctors said she needed to spend more time with her family. I remember her saying ‘they’re sending me home to die, Mum’.

“We had her for three years. And she achieved so much in those three years because she was very strong and very brave and courageous. She started driving. She could have not done this and not done that, but that was not our Dawn. She got on with life as best she could. She could’ve sat and done nothing but she didn’t.

“She said she was a ticking time bomb and one day she would go boom, and she lived with that on a daily basis.”

Sadly, Dawn fell ill on Christmas Eve and was rushed to hospital, where doctors found her aorta was leaking and her bowel had ruptured. She also had peritonitis and sepsis. She died in the early hours of Christmas Day.

She leaves Dale and daughters Terri-Anne and Tara.

Thankfully, tests show that Terri-Anne and Tara, and Gary’s daughter Courtney, do not have the genetic fault. “Hopefully, it ends now,” said Anne.

“I’m absolutely devastated because I’ve lost my husband and all three of my children now.”

Anne’s second daughter, Joanne, died in other circumstances at the age of 23 - but Anne believes the condition would likely have taken her life had it had the chance.

Now, the family wants to raise awareness of Ehlers-Danlos syndrome and wants to see information leaflets available in hospitals.

* See here for information on the condition and what to look out for.

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