We are truly blessed with a beautiful daughter, Ruo En. Next month she turns 7. At a glance, she looks like a normal child. She is always so adorable with her cheerfulness and being cheeky. When Ruo En was one year old, she was diagnosed with a rare condition called schizenccephaly pachygyria, coupled with multiple disability like spastic dystonic quadriplegic cerebral palsy and hypertonia. All these impaired her movement, coordination, balance and posture.
Despite her tender age, she went under the knives for an adductor release surgery in 2013. Due to hypertonia, there was a dislocation in her left and right hip. In 2014, Ruo En went for another 8 hours bone surgery to correct her hip dislocation issues again. 1 year after the surgery, Ruo En is now able to cycle on a tricycle, walk with assistance using a walker and even swim 3 laps with a float! These are the little (but big in our eyes) achievements and encouragement that keeps us going…
On top of all the motor skills issues, her speech is also delayed. Ruo En is highly sociable despite facing great hindrances in expressing herself. Presently, she is undergoing the Oral placement Therapy, hoping that one day she will find her voice after her jaw muscle is strengthens.
At the Society for the Physically Disabled (SPD), she is being introduced to the Augmentative and Alternative Communication (AAC). This allows her to communicate and enabled her to share her inner world with all her love ones and friends.
Although Ruo En is our only child, her medical and daily expenses are high. Supporting a special needs child is very draining and demanding, both financially and emotionally. It is still a long journey for us, as well as for all the families with special needs child, in this special needs community. However we are holding on to every little hope and chances, seeking for treatments, therapies that are beneficial to her. We want to improve her quality of life. Having said that, our greatest wish for her is to be highly independent, so that she can take care of her own daily living.