HURON — Everyone was seeing orange on May 25 at the Buchanan K-1 Center, when teachers and staff celebrated “Go Orange Day” to raise awareness of Prader-Willi Syndrome.
Kindergarten teacher Jordon Glanzer said her daughter, Brynlee, who was diagnosed with PWS at 9 days old, will begin kindergarten there next fall.
“My co-workers at Buchanan are amazing,” Glanzer said. “They truly care about Brynn’s well-being and taking the time to learn about her needs.”
Prader-Willi Syndrome is a genetic disorder affecting appetite, growth, metabolism and behavior. It is typically characterized by low muscle tone, short stature, and the hallmark characteristics — chronic feelings of insatiable hunger and a slowed metabolism that can lead to excessive eating and obesity.
“Imagine the hungriest part of your day,” Glanzer said. “Now take that feeling of hunger and apply it to every second, every minute, every hour of every day, for the rest of your life. Even eating a seven-course meal will not satisfy you because that message of hunger is constantly being sent from your brain.
“We have every cabinet, fridge and freezer locked so she can not access food,” she said. “Right now we can easily distract her from food, but we know that will not always be the case.”
Brynlee is a bubbly youngster with blonde hair and blue eyes, Glanzer said.
“She loves having everyone’s attention and will most likely be the class clown,” she said. “She loves to make people laugh. She is very in tune with people’s emotions and feels deeply for them whether they are mad, sad, nervous or happy.
“Like any child, Brynlee can have temper tantrums. Most of her tantrums are based around her food anxiety,” Glanzer said. “She gets upset when she can’t eat and other people are, or when she wants a certain food and we tell her no. She doesn’t understand why she can’t have foods that other kids eat.”
Glanzer said she and her husband, Brodie, were living in Milbank when Brynlee was born on Feb. 26, 2013, in Watertown. She weighed 5 pounds, 11 ounces.
“Our doctor knew almost  immediately that something was not right because she did not pass the screening for newborns,” she said. “Her cry was weak and she had extremely low muscle tone.”
Brynlee was flown to the Sanford NICU in Sioux Falls when she was 4 days old, where she spent 23 days.
“They ran test after test,” Glanzer said. “We received a range of things, from she may need a little extra time, all the way to she may be in a wheelchair for her whole life. We had no idea what to expect. Brynn was 9 days old when the genetics test came back and they found she was missing part of her 15th chromosome.”

This chromosome malformation is what causes hunger signals to fire constantly from the brain.
It is estimated that one in 12,000 to 15,000 people has PWS. Although considered rare, it is one of the most common conditions seen in genetic clinics and is the most common genetic cause of obesity.
“The biggest struggle we face is with food,” Glanzer said. “When I am not at work I spend most of my time prepping and cooking meals.”
Brynlee maintains a strict low carb-high fat (LCHF) diet. Because her metabolism is slower than a typical child, she eats about 800 calories and 25 net grams of fat a day. A typical child her age eats anywhere from 1200-1400 calories and around 130 total grams of carbs per day.
“Carbs and sugar to them are just like cocaine to a normal person,” Glanzer added. “She can get addicted to them. Her tantrums will get worse because she is craving that carb or sugar high. We’ve limited those her entire life, I think that’s why she’s doing as good as she is. We don’t want her to know what Skittles or M&Ms are.
“All of the teachers know if there is extra junk food to bring it to me,” she added, laughing. “I can eat it at school and don’t eat it at home.”
Glanzer said her daughter eats mainly meats (without sauces) and vegetables, with fruits added only rarely.
“I have special crackers I make, and special bread and cupcakes,” she said. “Even though she is in day care, I still have to provide food for her so I can be sure she is eating what I mapped out for her that day. I make her breakfast, lunch, dinner and two snacks.
“I want Brynn to have the most normal life possible so I spend extra time prepping for a special treat or fun day at school,” Glanzer added. “We do not live a normal life where you can go to a party, carnival or fair where there is food. We miss out on some opportunities if I know it will cause an issue with food anxiety.”
To ensure her daughter receives all the nutrients and vitamins she requires, she receives about $400 of supplements each month.
“We’re at 16 vitamins and supplements a day,” Glanzer said. “We call it her Super Food, and she loves it. They are all either powder or liquid and we mix it all together to make it a pudding.”
Glanzer said she also gives her daughter a growth hormone shot once a day to help her gain muscle and grow. Right now, her daughter’s growth is right on track.
“On top of all that, she has seizures,” Glanzer said. “And her spine is starting to curve, which is normal because she has low muscle tone. We go to a chiropractor each month to get aligned. We have a long list of things to do, but they’re so normal to us now we don’t even blink.”
Brynlee is in physical therapy, speech therapy and occupational therapy through the school district.
“She will struggle her whole life with being behind, but for now she is working really hard to keep up with her peers,” Glanzer said. “She gets tired very easily. Cognitively her learning is on point, but her fine motor and gross motor put her in the delayed category.”
Brynlee received a Make-A-Wish playset in July 2017.
Along with support from other teachers in the Buchanan K-1 Center, Glanzer said her family and three Facebook groups comprised of families dealing with PWS offer help.
“They share recipes their kids enjoy and we ask all sorts of questions,” she said. “Pinterest is my life — that’s where I get most of my ideas from. If someone says something worked for their kids, I make it.”
Glanzer said they take it day-by-day because the symptoms of PWS vary.
“We have hopes and dreams for her, but we know she will need extra help throughout the way,” she said.
Brynlee is expected to go through her school years with her peers, and will most likely be able to function in a group home setting of some sort.
“She will need a significant amount of support because of her dietary needs,” Glanzer said. “She will always feel hungry and feel the need to eat. She will need supervision and protection from food to be safe.
“My daughter needs us to be her voice and her advocate,” she added. “We can not give up because she can’t fight for herself; and even when she can, we will never stop fighting for her.”

COURTESY PHOTOS
Buchanan K-1 Center staff gather around 5-year-old Brynlee Glanzer, far right, sitting on the lap of her speech therapist, Lori Liebing, for Go Orange Day on May 25. Her mother, kindergarten teacher Jordon Glanzer, is third from the right in the front row. Brynlee was diagnosed with Prader-Willi Syndrome when she was 9 days old. She will be attending the school as a kindergartener next fall. May 25 was national Go Orange Day to raise awareness of the rare condition.