Source: Standard-journal

LEWISBURG — An innovative procedure in China may soon allow a little girl from Lewisburg to live a normal life despite being diagnosed with a condition that has no cure.

Heather Schutt, who will turn 3 on May 26, is scheduled to receive stem cell injections next month at the Chengyang People’s Hospital in Quingdao, China. She was diagnosed with Optic Nerve Hypoplasia when she was 4 months old. Children with ONH have underdeveloped optic nerves, which leave them with little to no vision.

Heather’s mother, Sarah Schutt, said she took Heather to see a vision specialist in December, who determined that Heather’s central vision is affected; however, she can still pick up colors and light.
Heather also suffers from a seizure disorder and an underactive pituitary. She receives replacement hormones for the ones her pituitary does not produce, and is on seizure medication as well.

At the hospital, Heather will receive injections from umbilical cord stem cells, which have been shown to promote the growth of the optic nerves of ONH patients in research by Shenzen, China-based Beike Biotechnologies.“She’s scheduled for six treatments,” Sarah said. The treatments will go back and forth between IV injections and spinal taps, for which Heather will be sedated.Heather’s treatments will begin June 17 and she will be discharged on July 19. In addition to the stem cell injections, Heather will go through therapy to help her adjust to the physical changes she may experience.Sarah has been in contact with a family from Indiana whose daughter experienced the treatment.“I’ve been getting a lot of information from them,” she said. “They said she’s doing a lot better.”Sarah said the treatments aren’t allowed by the U.S. Food and Drug Administration because of the political controversy over stem cells, even though this treatment doesn’t use embryonic cells. The family has high hopes for the treatment.“Within 22 hours of the first treatment, they’ve seen improvements in children,” Sarah said.Sarah said she hopes to see “enough improvement that she can go to public schools.”“That’s my goal, too,” said Linda Troup, Sarah’s mother and Heather’s “Nana.”Troup wants Heather to have a chance to attend school because “you need friends and you need to be exposed to stuff when you’re young.”Sarah and her mother believe Heather can handle public school because of her resiliency.“She doesn’t have any fear,” said Troup.Many children with ONH are afraid to walk, but Heather “doesn’t care if she falls.”Sarah agreed: “She’s very independent.”The family has saved the $36,000 needed to pay for the treatment, but will be holding several fundraisers to pay for the plane tickets to China and other expenses.“We’re looking for as many donations as possible, just to keep the costs down,” Sarah said.Doctors told Sarah that Heather may be benefited by a seventh treatment, but it’s too early to tell. If the doctors recommend an additional treatment, she will need to have $3,500 on hand to pay up front.Sarah estimates the cost for plane tickets and passports for Heather, herself and Justin, her boyfriend, will add up to about $5,000.“We’ll be staying with her in the hospital,” Sarah said.The family has set up a medical expense trust fund through a lawyer for Heather at Mifflinburg Bank & Trust, and any leftover funds will be given to children with similar conditions who need treatment.“If there are other families in the area whose children have been diagnosed with ONH, they should contact us,” Troup said, adding that they will continue to hold fundraisers for children with Heather’s condition in order to give back to the community who has supported them in the past few years.To help finance the trip, Coming Together for a Cause will hold a cook-out and poker run fundraiser benefiting Heather Schutt from May 21 to 23 at SMC Motorycycle Club Grounds in Milton. Friday, May 21 will feature entertainment from a DJ, karaoke, bike games and beverages. Saturday will feature the poker run, food and performances from Audio Eleven and Triple Dose. Tickets can be ordered by calling 594-3858 or e-mailing comingtogetherforacause@yahoo.com.The family will also be selling candles and food to raise funds.Donations to Heather’s medical trust fund should be made payable to “Heather Schutt” Medical Expense Trust” and mailed to Mifflinburg Bank & Trust Co., P.O. Box 186, Mifflinburg, PA 17844.More information about donations or about Heather’s trip can be found at myspace.com/stemcells4heather. The family will keep in touch on their trip through e-mail; their address is stemcells4heather@live.com.Staff Writer Amanda Alexander can be reached at

570-742-9671

570-742-9671

or e-mail amanda@standard-journal.com.