Who is En Ning?
Kang En Ning, who is now 8 1/2 years old, was diagnosed with Antley Bixler Syndrome. This rare disorder causes malformations of the head and face, as well as other skeletal abnormalities. She now attends a mainstream school that supports children with hearing loss.
In her 1st 2 years of life, the hospital was her 1st home. She was frequently hospitalised for sickness, if not admitted for surgeries. She went under the knives literally from the head to her toes. The major surgeries that she had gone through, were tracheostomy to secure her airway, one for the heart, cyst removal, a rectum reconstruction, cleft palate correction and clubfoot correction. For feeding, a PEG button is inserted for the feed to enter directly into her stomach. The anxiety that En Ning’s mother faced, with each time that her daughter was in the operation theatre, was not something that any parent would want to go through.
The duration of each hospital stay usually ranged from a few weeks to a few months. This had drained both mummy and daddy emotionally, physically, mentally and financially. Fortunately, as En Ning gets older, she has also grown physically stronger and the trips to the hospital became less often.
A new chapter in her life opens as she starts going to mainstream school. It is both exciting and worrying for her parents. Being in school means that she will be able to learn how to socialise with other children. However, her parents also worry that she may not be able to cope with regular school work. They are also concerned if she will get laughed at because of her physical appearance and being a target of bullying.
How did we keep going?
Despite her busy school schedule, En Ning still attends therapy sessions such as speech, OT, audio, listening and feeding.
Through the Medical Intervention Support Scheme, RDSS has helped to defray some of her therapy fees and this lightens the parents’ financial burden.
Journeying for life with a special need is never and not going to be easy. Her parents are always constantly worried for their daughter’s wellbeing. Their hope is that En Ning will gain more independence as she grows older.
Love is not Rare.