Kris and Karen Diamond noticed swelling in their two-week-old daughter and immediately rushed to the hospital. After a thorough checkup, she was diagnosed with lymphedema- a life-long condition.

Karen Diamond- who's also the mother of nine-year-old Bentley- welcomed daughter Willow on Monday, April  29th, 2019 at 37 weeks and one day, weighing 7lb 2oz. She had a birthmark of a port-wine stain in her back and hips that came to notice right after birth. Then, when she was two weeks old, Karen noticed something different and lumpy in her legs. She instantly went to the hospital and showed it to the pediatrician. The doctor noticed her legs looked clubbed and suspected herpes. The doctor even went so far as to ask if someone with a cold sore had kissed her.

At three weeks old, Willow was admitted to the hospital following rectal bleeding. She was found to have extra lymphatic fluid in her legs, which led to the idea of Klippel-Trenaunay Webber Syndrome (KTWS), a vascular disorder that can cause limbs to be disproportionate because of excess lymphatic fluid. This is often a result of birthmarks.

With that, the doctor suggested doing an MRI. It took two of them to conclude that Willow is suffering from lymphedema. It's a long-term condition that has no cure. So, Karen is now trying to reduce her daughter's swelling through continuous massage and manual lymphatic drainage.

The parents got utterly worried when the swelling came to notice and got so frightened that they would lose their baby girl.

We noticed she had a lump in her leg and her foot had started to look clubbed,” says Karen. “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's sharing the story to create awareness of the disease and the indications they're encountering. Karen was so worried when visiting the hospital because she could hear sad stories of babies dying everywhere, “so my mum took me to the waiting room where I flopped onto the seat and cried while they took bloods."

When the doctor conveyed that she was suffering from Klippel-Trenaunay Webber Syndrome, the parents did a quick research on google and dwelled into all the details and were shocked to hear all the negatives of the disease. When they returned home, Willow had a first bleed from her rectum, so they again went to the hospital and admitted her. Several other doctors have configured that the port-wine stain birthmarks may be the reason behind all this.

They're yet to know its impact on her health. Though the baby's super-resilient, "her future is just so uncertain!"

But the mother of two hopes to climb Ben Nevis in June of 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," she said.

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