Beckwith Wiedemann syndrome (BWS) is characterized by different body parts growing at different rates. Diagnosed at 11 months old, Lilli-Mai’s right leg is now nearly 3cm longer than her left leg. She has a larger right arm and hand than her left and an uneven tongue on either side. Even though she lost to her 13-month-old brother, Lilli-Mai’s height still surpassed the boy. Because of this syndrome, a 5-year-old girl often falls while playing and has to wear two shoes of different sizes. Doctors believe that the baby can recover from the disease when he grows up.
The baby’s mother – Beckie Perry, 24, said: “I was very scared when she was diagnosed with the syndrome. This mess will end. When she was born, everything was not clear. But as she got older, her clothes were all tight on one side. When she put on her shoes, only one foot fit, the other table didn’t. can’t get in”.
Beckie was also extremely afraid to learn this syndrome could increase the risk of early cancer in girls. Therefore, Lilli-Mai has to go for screening every 3 months to detect signs of cancer. The incidence of BWS syndrome is 1/15,000 births. However, two other brothers of Lilli-Mai, Ryleigh Queen (6 years old) and Willow Queen (3 years old) show no symptoms.
In addition to the manifestation of one half of the body growing faster than the other half, Lilli-Mai also often has night terrors, absence seizures (miniature seizures, affecting only conscious activity in a very short period of time. brief and sudden) and mild facial nerve paralysis. However, she still went to school last September. Beckie said: “We try to behave normally when she comes to class. She still plays sports at school, but if she is tired, she can tell the teacher and take the day off. She doesn’t seem to be paying attention. to the disease. She’s a really strong girl.”