Way back in 2009, Sarah Schutt was a 22 year old college student studying to become a Physician’s Assistant. Then she heard that her 2-year-old hypoplasia-blinded daughter was not incurable, but that many such babies had some vision returned in China. She left college, spent days and weeks learning about stem cells, raised funds from a generous small-town community and….well, let’s start at the beginning.
When Heather Schutt was born in 2007, she was blind, unable to see the faces of those who loved her, were caring for her. When she was two years old, local charitable organizations and donors raised $36,000 to send Heather to Qingdao, China, for a treatment that uses umbilical-cord stem cells to restore sight. The treatment for those with optic nerve hypoplasia is unavailable in the United States….and Sarah knows better than most why. “I was able to do a lot of research on my own,” she said.
Heather traveled with her mother, 23-year-old Sarah Schutt, and her great-grandmother, Nancy Erb, of Mifflinburg, to the Chinese hospital, where she received six intravenous treatments in four weeks.
“I don’t think she really understands,” Sarah said of Heather’s grasp of what happened to her. “She knew we weren’t home, and she really didn’t like the needle part …”After a five-week stay in China, they returned home July 20..
Medical professionals in China performed blood work every week on Heather, and though they explained the process, Sarah knew exactly what to expect and had few worries.
“I probably knew as much as the nurses,” she joked.
Physicians in America told Sarah that optic nerve hypoplasia causes vision problems and affects hormones. But in China, Sarah learned others had suffered even more as a result of it. The condition can cause growth, weight and brain damage, though it is not degenerative. Each child with the condition may be affected differently.
“It could get better,” Sarah said. “But without stem cells, most people don’t see a difference.”
Sarah said it is politics that kept such a procedure from being conducted in the United States.
“China uses umbilical-cord stem cells,” Sarah said, “which is pretty much considered medical waste.”
The embryonic component, however, continues to be added to legislative bills, and nothing is ever passed because of the controversy, she said. The treatment is used also to heal diseases such as multiple sclerosis.
When Heather was 4 months old, Sarah said, “We just didn’t think her sight was right. They hoped to have a pediatrician examine Heather, but then she got sick, had a seizure, and was in the hospital for 11 days. Her sugar level had dropped, and that’s when physicians discovered her hormone and sight trouble.
Optic nerve hypoplasia is one of the leading causes of blindness in children. “It was hard to accept at first,” Sarah said. “One of the first things we were told was there’s nothing that can be done.” While Heather couldn’t see or understand what was happening, Sarah was trying to settle the news in her own mind as well. But about four to five months later, hope arose.
Trucker Harold Wohlheiter, a member of the Masonic Motorcycle Club International Chapter 38, had picked up a publication in Harrisburg called “Moving On,” a magazine with articles all about truckers. One of those articles was about a little boy from Pennsylvania who had optic nerve hypoplasia. The boy’s grandparents had learned about stem cell surgery in China and raised the money necessary to send him there.
“I had this article in the truck for several weeks,” he said.
And then, one Sunday morning, while attending a breakfast at a local American Legion post, he met some of Heather’s relatives, including her grandparents, Linda and Glen Troup, whom he knew but hadn’t seen in several years. “We started reminiscing and talking,” Wohlheiter said.
A grandfather himself, he said they began sharing information about their grandchildren. The Troups then explained to him about Heather and her vision condition — the same one he had read about in the magazine article. “It’s like someone hit me with a hammer,” he said. The Lord really does work in mysterious ways---Don M.
He gave the article to the Troups, and Sarah contacted the Pennsylvania family in the article to get more information about what they may be able to do for Heather. But Wohlheiter thought he needed to do more, and he pitched the idea to raise money for Heather to his fellow motorcycle riders with Chapter 38.
“This thing fell in my lap,” he told them, “and I think we needed to do something.” His organization and another combined to raise about $20,000 for the trip. “Everyone was touched by this little girl’s story,” Wohlheiter said. Even in the rain, members showed up to run a fundraiser for Heather last August.
“I think it’s absolutely wonderful we could help give her sight,” said Nicole Longenberger, president of Coming Together with a Cause. “It’s the best gift — to see the faces of her loved ones, the smiles on their faces, and bright colors.”
The organization conducts two fundraisers each year to help children in need. Chapter 38 also does several fundraisers each year to help people in the community. In July, they escorted the body of a lance corporal killed overseas from the airport to his hometown of Williamsport. “It was a honor to do this,” Wohlheiter said, “but I don’t know if I want to do it again. It’s hard to ride a motorcycle while crying.”
It was hard to tell how fully the treatment had affected Heather’s vision at first. Once seeing only light and shadows, Sarah said, “We know she had vision before.” In addition, “She’s always been confident and independent,” she said.
But some changes were noticed after the first few treatments, and since July 20, when they returned home, and the stem cells began to work, Sarah said she has seen progress in her daughter.
When toys once had to be a foot in front of her for Heather to notice they were there — and then only an outline or a shadow — she now can located a toy three feet away.
And when once she swept in with both hands to take hold of something, she is now using one hand.
Her speech has also improved.
Sarah said doctors told her it could take up to six months to a year to see the full effects of the treatment.
Already beginning to teach Heather how to read Braille, Sarah is hoping that the little girl won’t need it.
“Our goal is that she will be able to function in public school,” Sarah said, “even if it’s with a little help.”
Heather continues to do the same things she’s always done.
She loves junk food, and often asks for her favorite foods — applesauce, pudding and “sghetti.”
Her favorite toy is a big ball won at the Union County West End Fair.
Sarah plans to dress Heather in a couple of traditional Chinese dresses she bought while in China, and take her picture to post on thank-you cards to all those who helped to send her there.
An annual haunted hay ride fundraiser will continue to be held in October to raise money to assist in Heather’s return to the Chinese hospital for more treatments that could help to restore even more of her sight, or for other families who want to go to China for the same.
This year, the ride will be held Oct. 22-23, and Oct. 29-30 at the West End Fairgrounds.
Donations may be made to Heather Schutt’s Medical Expense Trust at Mifflinburg Bank & Trust Co., P.O. Box 186, Mifflinburg, PA 17844.
More information is available by visiting www.myspace.com/stemcells4heather, e-mailing stemcells4heather@live.com, or calling Sarah or Linda at 524-4184.