Excited mom Karen Diamond welcomed her second child and first daughter into the world in April and called her Willow.
But when Willow was just two weeks old, the mom-of-two from Gateshead, England, noticed she had a lump in her leg and panicked.
“We noticed she had a lump in her leg and her foot had started to look clubbed,” Karen told The Metro newspaper.
“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.”
It would be the start of a long journey for this family and a quest to raise awareness of a rare condition.
Willow had been born with a birth mark on her back and hips which Karen and her husband Kris thought nothing of. It was only when a lump was discovered in her leg that they rushed her to hospital.
‘Flopped onto the seat and cried’
The doctor noticed Willow’s feet looked slightly clubbed and so asked if she had ever been kissed by someone with a cold sore, with the thought she may have herpes.
Immediately her parent’s feared the worse. Karen told The Metro: “I’ve heard so many incredibly sad stories of babies dying, so my mum took me to the waiting room where I flopped onto the seat and cried while they took bloods.”
Willow was allowed to return home after tests but at 3 weeks old was taken to hospital again after her parents noticed rectal bleeding.
Doctors found that Willow had extra fluid in her legs and suspected she may have Klippel-Trenaunay Webber Syndrome (KTWS), which can cause birthmarks and excessive growth of soft tissue.
“After two MRIs (scans), Willow was (also) diagnosed with lymphedema in both legs, complex lymphatic and vascular malformations in both legs and this too surrounds her bowel and perineum buttocks and rectal area,” Karen said, according to The Metro.
Lymphedema is a long-term condition with no cure.
Karen is now sharing her daughter’s story to raise awareness of the condition and make people aware of the visible differences.
She knows it’s “human nature” to stare, but she wishes people would smile and say hello when they notice Willow’s differences, according to the Metro.
Nurses and doctors at the hospital where she is treated have given her the nickname “Wonder Willow” due to her fighting spirit.
No cure for this condition
Karen is even planning to climb Scotland’s Ben Nevis, the highest mountain in the British Isles, to raise money for St Oswald’s Hospice, which has helped Willow.
“I’m hopeful one day she may be considered for a procedure where they can drain the fluid by attaching the lymphatics to veins. As there is no cure for this condition, it’s all about management and hoping for more research and treatments in the future,” Karen said.
Please share so more people are aware of this condition and to pay tribute to this family’s bravery.