" Everyone came here with a condition of their own, but everyone became cheerleaders to each other, to help each other get better. We became a family support group to where we’ve supported one another’s needs with a positive attitude, and acknowledging their accomplishments that they’ve made, and I am better. "
PRIOR TO TREATMENT: Justin received a complete evaluation by an independent ophthalmologist who had been chosen by his parents. After review of all the required medical documentation he was accepted into Beike's case study program for ONH and was the ninth child to be treated. His clinical exam prior to treatment revealed the following per his own ophthalmologist; "small hypoplastic nerves in both eyes" otherwise his eye structure was normal and fully intact. The nerves were described by his doctor as being "extremely small in size" with a probable "severely diminished level" of functioning axons. His diagnosis was confirmed with an MRI scan and a VEP test. Optic photos were also obtained. Justin's doctor also assessed his pupilary response which did not show a significant decrease in response or reaction. This indicated that Justin possibly had some minimal level of light perception. Justin's mother states, "He has always had some light perception, but never has locked eyes on a light and tracked it or reached out for it. He was always looking up at the sun or bright lights in a room before."
Upon arrival to the hospital in Hangzhou, Justin was examined by our staff doctors as well as our lead doctor, Dr. Mike. Consensus felt that Justin exhibited a 'slight reaction' to the flashlight test indicating that he had 'some light perception' but did not feel Justin could 'see objects at all'.
The parents hope for the treatment outcome: "To give Justin some visual capabilities in life. We don't expect anything close to 20/20 vision. We just want him to be able to appreciate some of the amazing things to see in this world."
Treatment Plan: 2 stem cell transfusion via IV and 2 stem cell injections via the spinal cord. In addition, nerve growth factors and cord serum were to be given with each stem cell transplant procedure.
First Stem Cell Transfusion was given via IV on Monday February 18th, 2008.
The first day post treatment (Tuesday February 19th): Justin's parents began to notice behavioral changes in him the morning after his first stem cell treatment. His mother reported that he was laughing while lying in his crib despite the fact that no one was playing with him and that he had no stimuli around him. This, his mother said, is very uncharacteristic of him. They also noted he seemed to be looking at things, and noted that as the day progressed he showed 'odd behavior', such as reactions to visual prompting, that indicated that he was actually looking at things. In the afternoon they asked the primary doctor on his case to come in and check him. Both his primary physician and the unit's lead physician went in to check on him. They again performed the flashlight test and he positively responded to the light.
Kirshner Ross-Vaden, who heads the optic case studies, happened to be in Hangzhou at the time and was notified.
Her statement of the events follows: I saw Justin when he arrived at the hospital and assessed him myself. He had no visual response and did not respond to light at all. On Monday afternoon he had his first stem cell transfusion via IV and the next day his parents began to notice some very odd behavior in him.
In the afternoon I was notified that Justin was responding to light while I was at my hotel nearby. I grabbed my camera and 10 minutes later I was in his room. I checked him using a flashing ball with the lights in the room very dimmed but not totally dark and to my surprise, Justin looked right at the ball. Not only did he target the ball with his eyes he then tracked it as I moved it back and forth. I then turned all the lights on in the room to see if he could still do it and sure enough he tracked the ball. Not only could he see it and follow it but he also reached out and hit it several times with his hand. He was able to target it with his hand each time I moved it to another location in front of him.
I tested him at about 8 to 10 inches away from his face and got no response but moved it closer a little at a time. At 4 to 5 inches in front of his face he looked at it, followed it and reached out and hit it every single time. This event was approximately 25 hours after his first stem cell transplant.
It was all very sudden, but I did take time to film it. This is raw unplanned footage so you will have to forgive the appearance of us adults as we did not take time to dress for the camera but I doubt you will care what his mom and I look like. You will be too busy watching that baby. It was a priceless and emotional moment for both the parents and for me. I can not even begin to tell you how this warms my heart. It is these moments that make the hard work we all do at Beike Biotech worth every extra minute.
Please see below for video clips of this exceptional moment in time as a mother knows that for the first time in her child's life that he can see.
Video Clips
Justin being tested with the lights off:
Justin being tested with the lights off (continued):
Justin being tested with the lights on:
Justin watching and grabbing a ball:
Justin's mom talking about his laughter:
Justin's mom discussing her reaction to his improvements:
Justin's dad talking about his experiences in China:
Justin's Chinese physician, Dr. Mike, discussing Justin's case:
*We will of course update Justin's patient experience again at the end of his treatment as at the writing of this he is still undergoing treatment.
