Raphael Lee

Raphael is the youngest child in the Lee family. With the birth weight of 1.13kg, he is also the lightest amongst the four kids. Unlike his siblings, his journey has been a rough and winding road. He was resuscitated at birth, intubated, tube fed and was constantly battling with low blood pressure and blood sugar during the first few weeks of his life. The kind nurses at the neonatal unit would ask us to pray for him each time we went to visit. For the first few weeks, I did not know how his cry sounded like and could not see his face very well. His tiny face and body were covered with tubes and patches. Yet he never gave up in fighting for his life. We were rejoicing when he finally got out of his critical condition. Little did we know that the battle was just beginning. His doctor told us just before he was discharged from 50 days stay of neonatal unit that his brains suffered multiple cysts and his eyes had borderline stage 3 retinopathy. At stage 3 retinopathy he would need an eye operation to save his eyesight.

The fourteen months thereafter has been shuttles between home therapy, neonatologist, eyes and neurologist clinics, rehabilitation centers and Chinese sinseh for Chinese massages. The first couple of days after the visits to neonatologist and neurologist were always very difficult. It was a constant stream of bad news and more bad news. Raphael was found to have severe cerebral palsy. His left arm and both legs were severely affected by the brain injury. While we were thankful that he did not need an eye operation, he had severe strabismus. At the end of the 14 months, he was still not moving forward. That was when I decided to switch his therapy program to Glen Doman program.

The February class was full then. We felt that we had already wasted a lot of time and therefore did not want to wait for another 4 months to start Glen Doman program. While we registered ourselves for the June ‘What to do with your brain injured child’ course, we went to see Max Briggs who flew to Singapore from the Australian Institute for Achievement of Human Potential. He got Raphael started on the basic Glen Doman program. Within the first week, Raphael was moving forward. With our hope gearing higher up, we embarked on the journey to Philadelphia in June. In the Philadelphia Institute, Mathew Newell felt that Raphael was ready for Aspirant appointment. So we went back to Philadelphia in less than 2 months. The programme was very intensive. We learnt to break a day into blocks of 5 to 15 mins. The typical daily program was 10 hours a day. While we were trained to maximize our time, our little trooper was definitely getting tougher. By the time we were 9 months into the Glen Doman program, he was crawling 400m a day and creeping 1.6km a day.

After one year of Glen Doman program, we begin to be concerned about his physical structure. I was concerned if he was developing scoliosis. Right after the intensive treatment appointment in Philadelphia, we brought Raphael to a pediatric orthopedic for an evaluation and found out that although he had not developed scoliosis then, his pelvis was badly tilted and he was having a severe hip subluxation and rigidity. The institute could not give me an answer to the problem. That was when I realized the need to look for an alternative solution. The ex IAHP families referred me to ABR therapy (which was ANR therapy then). So again we flew to Montreal ABR center in less than two months after we came back from Philadelphia.

We have since been doing ABR therapy for one and a quarter year and Raphael is about three and a half years old now. Although he has achieved much in head control, better sitting and assisted standing posture and the correction of his physical structure, he still needs a lot of work especially in the lumbar and pelvic regions. Because of the lack of the rotational mobility in his lumbar area, he is unable to manage a normal creeping pattern and bunny hop quite a bit. Raphael has come a long way. Many doctors and therapists cannot believe the achievements he has made during the last couple of years. During the last one year, we also supplement the ABR therapy with cranial osteopathic therapy, Neuro development treatment, sensory integration therapy and listening therapy. I am grateful to my family and friends for their prayers and supports throughout this journey. Most of all I thank God for His help and guidance in bringing so many miracles and so much joy to Raphael. Indeed Raphael is a very special gift from above!

Sarah Lee
August 2005