Lilli Mann

Age 9, U.S.A

Optic Nerve Hypoplasia (ONH)

Watch her video on Vimeo here

Condition Before Treatment



Lilli was born with Optic Nerve Hypoplasia, (ONH). A congenital condition that is the result of an underdeveloped optic nerve. Because of this Lilli has only limited light perception.

Lilli's mom, Cindy, describes the process that brought them to China for stem cell threapy,

"She was six monthes old when she was diagnosed and they said that it wasn't a degenerative disease, it wasn't going to get any worse but it also wasn't going to get any better..."

"And it was just kind of something that there was no treatment for, glasses don't help, and there was really nothing. We kind of lived with it for awhile. Then we started doing research off and on for a long time before this [stem cells] was around, and then about two years ago we heard about it and decided it was something we wanted to do, there was never a question."

"I don't know if I can say that I would have been one of the first ones to do it, but since there were so many people ahead of us that haven't seen side effects and had seen improvement, we thought it was worth it to try.



Treatment in China

Lilli received 5 umbilical cord blood stem cell injections. She also received physical therapy, occupational therapy, electric wave therapy, and acupuncture.




Condition After Treatment



Cindy describes the improvements that Lilli experienced while receiving treatment in China,

"While after her first treatment, she was recieving electric wave therapy in our room. We think it was about 12 feet, she noticed the TV on the wall, she asked what the big black square was. It's not odd for her to ask what something is, but I thought that was further than what she will normally recognize, and after that it's just been little things..."

"When we were out walking she would notice things. She would notice little door nobs and just random things that she never noticed before..."

"She had a V.E.P. test [Visual Evoked Potential test] when we first got here and had another one this week and it showed improvement. So we are excited to get another one in three to six months to see what that one shows too."

"Even if she still reads braille and uses a cane, any new improvements in her vision is going to help her."