Websites of Kids with ONH
More videos from those who have had Stem Cell Treatment
Macie Morse received her first round of stem cells in 2008 to treat blindness caused by optic nerve hypoplasia. After this treatment her vision had improved to a level where she could get her driver's license.
Francesco can See!! This video takes place in my sons pediatric office. I took him for a normal check up two weeks after returning from China. We have been in this room on more than one occasion but he HAS NEVER done anything like this before. As soon as we entered the room, he went to the walls and started to "grab" for the paintings!!!
Adam Kitchen: Age 32, USA and his wife, Laurie
Diagnosis: Adam was born with Optic Nerve Atrophy.
Condition Prior to Treatment: Adam describes his vision as, "If you took your glasses and you put Vaseline on them, that’s basically the way that I would see. You can kind of see things that are there. Just, there's no clarity and no definition to it."
Adam wore glasses that brought his vision to the "2200-2400" range, and he was classified as legally blind.
Adam's wife Laurie describes Adam as highly functional for a legally blind person but says, “where we do notice [his blindness] is when he puts something down, walks away, comes back, doesn't know where he put it."
Laurie describes Adam's challenges keeping up with his four children saying, “now that our kids are getting older, our oldest daughter sings in concerts… our other ones have done sports and things. And he can never tell which one is which. He always asks me which one is which."
Adam used magnifiers and glasses to help accommodate his Optic Nerve Atrophy. Treatment Received in ChinaAdam received nine stem cell transplants, 4 via IV and 5 lumbars. Adam also received acupuncture and facial massage during therapy.
Condition Following Treatment:Adam experienced improvements in his vision during his therapy in China.
Laurie told us “in Adam's case now, he can see the date on his watch. He had ever been able to see that before. He's reading things on his Blackberry that he was never able to see before. Are these small things? To you and me, maybe. To him, no. They're huge."
Adam said “after I received my second injection… we had gone out and did the testing out there again. And at that point I could see the big E from a full meter back. So about 3 feet back from when I first started."
"When I first showed up, it was about 216 centimeters back is where I could see the E. And I've gone up to about 405 centimeters. So it's nearly doubled since."
Adam talked about what it felt like to experience new vision for the first time saying, “there’s just so much pop to everything. Just as I walk through the [Hospital] Common Area, the sofas have those little white seams on the side. It just seems like all the sudden now it just pops out at me. Just every little line, or every definition is coming out all of the sudden."
Last year Tyler received transplants of umbilical cord blood stem cells in China. Here, several months after the therapy, he talks about the improvements he saw in his vision and his mother discusses her role as caregiver during the month abroad.
Before Matt received adult stem cell therapy to treat the Optic Nerve Atrophy he's had since birth, he had to hold a book an inch from his face to read the text. He could see subtitles in a theater if he was in the very front row. While he couldn't see detail, he could see images and movement enough to play professional football. But he had trouble tracking his daughter at a soccer game and reading bed-time stories to the kids at night. He wasn't going to sit by if he could seek out some improvement.
Matt received IV, LP and retro-bulbar (RB) injections of adult stem cells. Early in his month-long treatment he began to notice a significant increase in clarity. Taking the Snell Test after his RB he could read the chart much better.
How much better? During his interview video he told us the numbers he had prior to departure. They're impressive. But he stressed that "for some people with 20/20 vision, they don't really know what a drop in 200 feet or 30 to 40 feet is. But let me tell you, it's a significant number. It changes the way that you see."
Condition: Optic Nerve Hypoplasia (ONH)
Course of Treatment
Lawrence received 9 Stem Cell Transplants, 4 via IV and 5 via spinal. He also received electric wave therapy and acupuncture.
Reason for Coming for Treatment
Lawrence Brown III was born with Optic Nerve Hypoplasia. The doctors originally told his family that there was no treatment available for ONH. Lawrence had limited light perception and was able to see colors. However, he was not able to distinguish shapes or any detail.
He used several tools to help aid his vision such as JAWS, a talking computer program, and a cane. He was unable to read print letters, and learned to read Braille. Lawrence can read English, Spanish, and French Braille.
Lawrence was very successful in his every day life, but his family felt that any treatment available to help give him more independence was worth a try.
Condition After the Treatment
While Lawrence was receiving treatment in the hospital, he began to notice several changes to his vision. He noticed that light seemed much brighter to him, and colors appeared much more vivid. He was able to distinguish objects when walking outside, like flowers or written Chinese characters on walls. The nystagmus of his eyes decreased significantly.
He began to see the movement of people and objects instead of just feeling it. This often caused him to become dizzy and uncomfortable.
During his stay, Lawrence was able to see and recognize extremely large print letters for the first time in his life. He was able to find objects he had dropped on the floor.
After returning home, Lawrence noticed that he was able to see shadows at night. People's facial features became clearer. He was able to pick up a dropped object on the floor without searching for it with his hands.
Lawrence was able to march out with his marching band for short distances without having anyone help him. Maneuvering through streets and crowded sidewalks became easier for him. Lawrence learned to read the print alphabet at 400 font. He stopped using his cane while at school.