DX Hypogenesis of the Corpus Callosum
The Incredible Story of Wei Xuan
Wei Xuan at 7 months of age: He still needs nasogastric tube feeding, his muscle tone is poor, and he cannot roll over.
As the baby has more opportunity on his belly on the floor the baby moves his arms and legs more. The more he does so, the better he gets. He is makes many experiments to discover what he needs to do in order to move forward. At first, he may actually move backwards or pivot around. Although this may appear to be frustrating for him, this is progress.
When did you first realize your child had a problem?
Right after Wei Xuan was born, his hands and legs turned purple. He was sent to the Intensive Care Unit immediately. The paediatrician suspected Respiratory Distress Syndrome and prescribed antibiotics. Subsequently, we found that that he couldn’t suck at all and had to be fed via a nasal gastric tube inserted through his nose. His whole body was also very floppy. He was in intensive care for two weeks and was placed under an oxygen hood to help him to breathe. Subsequently, he was transferred to a high dependency ward for two more weeks. We had to learn how to insert and change the gastric tube, and also how to feed him through the tube. Before he was discharged, we were taught how to do Cardio Pulmonary Resuscitation for him in case of an emergency.
What were you told by your doctors about your child’s diagnosis?
After a lot of different tests and MRI scans, Wei Xuan was diagnosed with Hypogenesis of the Corpus Callosum, which means that the connection between the left and right brain did not develop properly during pregnancy.
At 1 year 9 months, Wei Xuan still has his G-tube and is unable to roll over.
Were you given a prognosis? If so, what did you think about it?
We were told that his condition would not improve. At one point his physiotherapist told us that his weak muscle tone condition is something that will not change during his whole life. It was hard for us to accept this and we kept looking for other ways to help him.
A friend told us about the What To Do About Your Brain-Injured Child Course in Singapore. We found out more about it and read the book. I attended the course and Wei Xuan’s father attended the same course one year later. We flew with Wei Xuan to Philadelphia for our first appointment three months after father completed the course.
What was the most important thing you learned in the course?
The most important thing I learned in the course was that Wei Xuan’s condition is a form of brain injury and with the program it can fixed. We felt strongly that we had found the right path.
How soon did you begin to see some result?
We started using a tactile program that permitted Wei Xuan to experience what it feels like to crawl. After about 2 months, we noticed for the first time that he could lift up his head. He was not able to do so for the previous three years.
During our first trip to Philadelphia, Rumiko Ion Doman, Vice Director of The Institute for Physical Excellence, evaluates Wei Xuan.
Miracle #1: Against all the odds, Wei Xuan begins to crawl for the first time.
Wei Xuan, age 5, reading a book while standing in a device that allows him to bear his own weight and experience the sensations of standing.
Now Wei Xuan can crawl on carpeting and over 20 cm high obstacles.
The early stages of learning to creep: Wei Xuan learns how to hold the creep position
Miracle #2: Wei Xuan creeping independently
Wei Xuan learned to read at a very young age. Here he reads one of hundreds of sophisticated books made by mother for him.
Wei Xuan receives auditory stimulation to help language development.
Wei Xuan begins on the pathway to walking. This environment helps him to experience what it feels like to walk for the first time.
Miracle #3: On his feet at last! Wei Xuan begins to stand on the overhead ladder.
Miracle #4: No more standing still! Now Wei Xuan walks the ladder independently.
“I am reading law books in three languages now.”
Wei Xuan explains, “I started to do the program when I was 3.5 years old, when I wasn’t able to see and hear well. I cried almost every time I heard laughter from my family. I thought they were laughing at me and I didn’t know what was happening in this world. But now I can read in three languages well. This was not by chance, it was all through doing the Intensive Treatment Program. I am reading Law books in three languages now. All brain-injured kids have the ability to learn to read and they can read very well. I read very fast. I read so fast my mum cannot catch up with me. She is so slow in flipping the pages. I look away because I have already read them. Trust me, your kids will reach my stage, if you consistently do the intelligence program. My dream is to become a lawyer, that is why I am reading Law books now.”
Overall, what do you think about the program?
It is a great but tough program. However, it works! Without this program Wei Xuan would not have made it this far.
What do you think about Wei-Xuan right now and his future?
While we could never have imagined him doing what he can do now, he still has long way to go. We hope that one day he can live independently and fulfil his dreams.
What advice would you give another family with a brain-injured child?
Attend the What To Do About Your Brain-Injured Child Course and get on to The Intensive Treatment Program. There is no short-cut for the journey towards recovery. Do the program diligently and be patient, and you will see improvements as you go along. Cherish and celebrate every little success along the way!
Anything else you would like to say?
Besides years of experience specializing in brain-injured kids, the staff at The Institutes also have the heart for our children. They are the best people to trust to help brain-injured kids to get well.
Wei Xuan has a dedicated family that are by his side every minute of every day.
Today Wei Xuan still gets up every day and fights the good fight to keep getting better. He was a sickly little baby unable to eat without a tube, and he was sensitive or allergic to many foods. There were times when he was not expected to live. There was no expectation that he would ever move, understand, or be able to communicate.
Today he is walking the overhead ladder independently and he has recently stood for 35 seconds completely on his own – an astonishing feat for him.
Wei Xuan and Mother with the staff in Singapore.
At his very first evaluation when he was only 34 months old, the staff evaluating him asked him what he wanted to be when he grew up. His clear response was a lawyer. As he says today he is studying case law and has become quite knowledgeable about the laws of his own country of Singapore.
He still has a few major miracles to go before he gets his Law degree, but if miracles are made of hard work and determination then Wei Xuan and his mother and father and brother have their own family recipe and they have proven that it works.
In carving out his own pathway to wellness, Wei Xuan has inspired many other brain-injured children and their families along the way.
Well done, Wei Xuan, well done. The next stop on this journey – walking!