For Lilli Mann, daughter of David and Christi Mann, it was the first time since birth she could see her yard snow-covered.
Lilli, born with optic nerve hypoplasia, an incurable disease which occurs while in the womb, traveled to Qingdao, China, with her mother in September to receive stem cell injections said to repair damaged nerve tissue. Although the 25-day visit was difficult and full of treatments and therapies brand new to Lilli, for the Manns the results are thrilling.
 Lilli Mann, Wahpeton, received stem cell treatment in China to improve her vision. She was born with optic nerve hypoplasia. She also received several other treatments, including fire cupping, shown above, which produces a reduced air pressure. photo submitted Advertisement |
Prior to the two visual evoked potential (VEP) scans performed before Lilli's release from the Qingdao hospital — which yielded the good results — doctors set a strict treatment schedule for her. The schedule included five stem cell injections and rigorous five-day-a-week physical therapy that included acupuncture, acu-pressure, electric wave and massage therapy and fire cupping.
Christi Mann said her daughter was nervous at first to endure the fire cups and acupuncture, but ended up loving both procedures by the time she left the hospital. Fire cups are a traditional medicine used by the Chinese, which are glass, cup-shaped bulbs heated and then placed on the back to create a reduced air pressure. When removed, Christi said, it creates a sucking sound.
"Talk about culture shock," she said. "They've got thousands of years of reasons why they do that."
Lilli didn't adapt as quickly to the stem cell treatment. She rejected the two spinal injections, so, doctors agreed to give all of the injections via an IV on the top of Lilli's hand. Each treatment lasted 45-60 minutes. Christi said she was slightly nervous for the change in treatment, but Lilli was uncomfortable and unhappy with the stem cell treatment to be injected in the spine.
"She was scheduled to have three IVs and two spinals," she said. "But there's really no evidence that the spinal injections work better than the IV."
Stem cells are meant to work as an "internal repair system" that mature between six and nine months of being injected. While the Manns hope for improvement beyond what Lilli has gone through to date, she'll always maintain what advances she's made because of her visit to China.
Christi first began to see a change in Lilli during outings to the mall being built across the street from the hospital in Qingdao.
"We went there everyday to get out and do something," Christi said. "She'd find things on the wall and ask what they were."
Instead of immediately telling her, Christi would ask Lilli what she was pointing at and press her to walk up to the subject of interest.
"Like on a white wall, she'd see a gray doorstop. It was great," Christi said.
Lilli was particularly thrilled to be able to read large print. During an eye test, Christi indicated doctors determined Lilli was seeing large letters from 60 centimeters away, when at home, prior to the treatment, she was seeing them at 15 centimeters away.
Now that she has returned to Wahpeton, Lilli's improved range of vision continues at home and in the classroom. She's pointed out to her parents' cars parked an average of two parking lots away. Christi said she's even been able to identify the car's color.
In school, Lilli is able to participate in games of kickball in gym class, where they use a purple ball she's able to identify.
The Manns anticipate Lilli will begin to start seeing a variety of new things, but they must keep her fever free because a high temperature can kill the stem cells. And while Lilli will learn a lot of new things on her own, Christi said they've been and will continue to work with Lilli a lot more, encouraging her to describe what she sees instead of just pointing at an object.
"Before, when the TV was on she would sit and listen. Now I try to have her sit in front and tell me what she can see," Christi said.
The Manns have left open an account at Gate City Bank, Wahpeton, if individuals care to make a donation for Lilli. While they were able to raise just under $30,000 from a variety of generous individuals and organizations for the treatments in China, nearly $5,000 was paid out of pocket. Donations can be made to Gate City Bank, 802 Dakota Avenue, Wahpeton, ND 58075 or to any Gate City Bank location.
Abby Thorn wrote on Dec 30, 2009 3:33 PM:
What an encouraging feeling to know that someone has gone through what my family and I are about to do. My 9 year old daughter also has ONH and we are in the process of raising the money to take her to China for the stem-cell treatment. Thank you for sharing your story and for having the faith to take your child there. It is so comforting to know that others have been where we are. Lilli, you are where I hope my daughter will be in just a few short months. "
FOZIA AMIN wrote on Dec 8, 2009 6:03 PM:
Lisa McInroy wrote on Dec 8, 2009 8:35 AM:
I am so very happy for Lilli!!! If anyone would go the extra mile for their child, Dan and Christi, it's the two of you! Knowing Lilli and what a go-getter she is, she's going to go a long way with this gift of sight. I'll keep her in my prayers. "
Roberta Schreiber wrote on Dec 7, 2009 12:56 PM: