MOEBIUS SYNDROME IN THE NEWS
Today we read about a mother in Thailand and her love for her child--a child who has Moebius Syndrome and has faced unique challenges.  Yet with experimental new therapies, progress is being made:
"As the mother of a child with a rare congenital neurological disorder, Kornwara Asavalarpnirundon has been on an emotional roller coaster ride. She has been tireless in her efforts to find medical and alternative remedies to address her baby's condition in the hope that her little girl will one day grow up to lead as much of a normal life as possible.

Little Kanchalita, fondly called by her nickname Shan Shan, was born with Moebius Syndrome, which has constrained her physical mobility to a great degree, leaving the two-year-old totally dependent on her parents.
Kornwara still vividly recalls the quandary she first experienced on being told by doctors that her first child was born with medical defects.
"When I was first told that my daughter was born with a neurological condition that primarily debilitates the muscles that control facial expression and eye movement, I was sad and blue and asked myself 'Why me?', 'Why my poor girl?'," she says. "But I had to snap out of my depression by telling myself that it would do no good because my baby is dependent on me, so I could not afford to wallow in self pity when she needed me most. I told myself: why make things worse by panicking and being gloomy? I had to accept the fact that my child was not physically normal at birth.
"After my husband and I got a hold of our emotions, we began to study her medical condition to better understand what we were up against. After much study, we continue to read and search for new developments in the medical field, in the hope that our daughter could further benefit from it one day."
The well-heeled Asavalarpnirundon family, who manage their own real estate business, left no stone unturned in their search to treat the apple of their eye. Regular trips with her daughter to private and government hospitals, when needed for special treatment, have made her realise just how blessed they are to have the finances to offer their offspring the best medical treatment in the world. Due to the complex nature of Moebius Syndrome, Shan Shan required a string of treatments, all of which ended in mixed results.

With a never-say-die attitude Kornwara continued her quest. She finally stumbled on a treatment called Vojta therapy - a highly specialised clinical tool designed to enhance the motor development of a child - after hooking up with Walter Lee's Zy Movement Foundation (ZMF), which was set up earlier this year to address a number of issues relating to facilitating and empowering children with movement disabilities.
After reading accounts of Lee's tumultuous journey across the world to help his youngest son Zy - who was born with one complete left arm, half a right arm and no right leg to walk - the young mother saw a glimpse of hope for little girl.
This made Kornwara all the more interested in getting involved with ZMF, which has played an instrumental role in helping bring this novel therapeutic programme to Thailand for the first time. Thanks to a memorandum of understanding between the Department of Medical Services, Ministry of Public Health, Heidelberg University Hospital and ZMF in 2009, there will be Vojta therapy training for a selected group of medical staff from Aug 15-26 at Sirinthorn National Medical Rehabilitation Centre (SNMRC). The treatment should be available to the public by the middle of 2014.
With Mr Lee's words of encouragement and her fiery determination to help her daughter, the 31-year-old businesswoman began to study Vojta therapy.

Developed as early as the 1960s by a Czech neurologist, Prof Dr Vaclav Vojta, it was originally used as a procedure to help enhance the motor development of children affected by cerebral palsy. Years later, it was Prof Dr Theodor Hellbruegge of the Kindercentrum, University of Munich, who went on to develop the groundbreaking therapy, based on Dr Vojta's s pioneering research in the field.
This therapy is founded on "reflex locomotion", which uses special stimulation zones in a specific positioning of the patient to promote a motor response. Muscles throughout the body are activated in a coordinated pattern and simultaneously the central nervous system is addressed at all its regulatory levels.
The Vojta technique is considered a high-level clinical tool which can be employed for evaluating the development of a child right from birth, making it a reliable diagnostic feature for both prevention as well as cure.
"Since I was already working closely with Mr Lee and ZMF to bring this medical knowledge [Vojta therapy] to Thailand, my husband and I decided to have our daughter try the treatment so we could personally validate it to others when it is becomes available in the country in a couple of years.
"So in May of this year, we flew with Shan Shan to Siegen, Germany for this very purpose. The procedure is straightforward. First, the child is assessed in order for the therapists to design a set of treatment postures to fit her needs. Then we as parents were taught how to administer the exercises, which are mandated to be carried out four times a day by the parent with whom the child spends most time. This practice is proven to help improve the development of the child best.
"In only two months of administering the Vojta therapy at home, we have seen a significant improvement in the strength she has in her neck and back . Shan Shan is now more comfortable staying on her tummy, with her elbow down to support her body. She can even move one arm forward, towards the objects that interest her, without falling down."

Read the whole thing.  And all the best to little Shan-Shan...


"It is never too late to be who you might have been." -George
Eliot