A mum was asked by doctors if she had kissed anyone with a cold sore as they tried to find out what was wrong with her newborn.
Karen Diamond, 28, was terrified her newborn daughter, Willow, might die when doctors noticed she had a clubbed foot.
Willow was born with a port wine stain on her back and hips, something Karen and her husband Kris, 35, weren't aware of until she was delivered.
Karen, from Gateshead, also mum to son Bentley, nine, also noticed a small lump in Willow's leg when she was two weeks old – and immediately feared it could be sinister.
They took Willow to the hospital where medics that her feet look slightly clubbed, to which a doctor asked whether she had ever been kissed by someone with a cold sore.
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Karen knew the answer was no, but the suggestion was heartbreaking because she'd heard numerous tragic stories about babies dying as a result.
Following two MRI scans, Willow was diagnosed with lymphedema in both legs, complex lymphatic and vascular malformations in her legs and surrounding her bowel and rectal area.
Karen tries to fight off Willow's lymphedema by massaging her legs daily and doing manual lymphatic drainage every day.
Willow hasn't lost her fighting spirit and continues to amaze everyone, earning her the name 'Wonder Willow' by nurses.
Karen acknowledges that lymphedema will make Willow look different, but it doesn't define her, and she hopes to highlight this to people of all ages who battle with lymphedema daily.
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"Two weeks after her birth we noticed she had a lump in her leg and her foot had started to look clubbed. It was horrendous, my husband immediately thought the worst as he sadly lost his cousin and best friend to cancer.
"Both our minds ran wild over something that was so small because we just wanted her to be okay."
She added: "We are yet to know how it will impact her health. She's super resilient right now but her future is just so uncertain.
Karen talked about how her son, Bentley has been heavily involved with Willow's journey and he has adapted incredibly well to having a baby sister with such a rare condition.
In June 2020, Karen, along with several members of her family, are planning to climb Ben Nevis to raise money for St Oswald's Hospice who have helped Willow so much.
"We hope to climb Ben Nevis in June 2020 to raise funds for St Oswald's Hospice and the Lymphoedema Support Network.
"I am now part of a group and speak to other people who have the condition and was pleasantly surprised at how well they all manage their conditions.
"Being rare is beautiful and amazing. Lymphedema may make Willow, and others like her, look different but it does not define her/them.
"Don't worry about looking, it's human nature, but please smile and say hello also."
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