Kang En Ning, who is now 2.5 years old, was diagnosed with Antley Bixler Syndrome at birth. According to research, 85% of babies with this condition died shortly after birth, usually from suffocation due to under developed upper airway.
It was a miracle that En Ning survived through that dangerous period without any complication. However, En Ning does have a narrow upper airway and in order to help her with her breathing, she underwent a tracheotomy surgery when she was three weeks old. There after, she had undergone few more surgeries. One of the major surgeries was, at 2 months old, to close a 5mm hole in her heart. When she was 6 months old, again she underwent a major surgery to remove a cyst. Then at the age of 9 months, she had a rectum reconstruction.
Our little warrior, En Ning, once again went into the operation theatre at 15 months old for another major surgery to correct her cleft palate and PEG feeding button. Every time the parents saw her been pushed into the operation theatre, tears followed and they will pray that she survive the long hours of operation.
En Ning is due for an operation to correct her fused skull prematurely. She is waiting for the doctor’s review and green light to go ahead with it. Despite all the medical challenges she faces, En Ning has good cognitive development and she is now attending an early intervention program at special school. Apart for schooling, En Ning also required additional physiotherapy sessions.
Since mid of 2014, RDSS is supporting the family through our therapy intervention program where an amount of $400.00 will be reimbursed to her for therapy sessions she attended.