The story of Kayleigh
At 26 weeks pregnant in 2014, I was advised to consider termination. My baby had abnormal tumors everywhere, and doctors had never seen anything like it. With no answers, I chose to continue the pregnancy.
Emily was rushed to Sheffield Children’s Hospital at birth. An MRI revealed widespread malformations inside and outside her organs, from her thighs to her lungs, along with a large port wine stain on her back.
At 16 months, Emily began dragging one leg. Great Ormond Street Hospital diagnosed her with lymphangiomatosis. Scans showed lymphatic and vascular malformations in every organ from her lungs to her groin, with severe involvement in her spleen, abdomen, and groin. She also developed scoliosis and a leg length discrepancy.
At five years old, Emily’s malformations had doubled. She began Sirolimus, which shrank most of them, even clearing her lungs. However, the medication weakened her immune system, leading to a year of recurrent chest infections and long-term antibiotics.
Over the years, she has faced internal bleeding, unexplained blood results, compression on her organs and bowel, chronic pain, constipation, and mobility issues requiring a wheelchair and back brace. Her bone density decreased, requiring four-monthly bisphosphonate infusions.
At six, Emily became severely ill, lost weight, and became anaemic. Despite extensive tests, no cause was found. After taking bowel preparation medicine, her health suddenly improved, though it took six months to regain weight and strength.
Now nine, Emily has endured a tough year with internal bleeding, recurrent pneumonia, anaemia, and significant weight loss. She experiences daily pain but continues to fight, facing the relentless challenges of complex lymphatic anomalies.