A bone marrow registry drive will be this Saturday in Lindsborg in honor of Aryanna Nagy, a 9-year-old Soderstrom Elementary School student.


A bone marrow registry drive will be this Saturday in Lindsborg in honor of Aryanna Nagy, a 9-year-old Soderstrom Elementary School student.
The quest to find her a match is in case the Lindsborg fourth-grader’s experimental chemotherapy-like medications fail and she should need a bone marrow transplant. This could be the only cure for her life-threatening disease.
The drive will be from 10:30 a.m. to 1:30 p.m. Saturday at Soderstrom Elementary School, 227 N. Washington St.
“I’m so thankful we are doing this bone marrow drive,” said her mother, Jakki Nagy. “If she does end up needing it, it will be a fast-acting thing. So we’re getting that done now.”

The disease
Aryanna has Idiopathic Aplastic Anemia. It is a rare blood disorder in the cancer family. Her bone marrow fails to produce new blood cells.
Aryanna’s mother first noticed something was wrong when she found a large, dark bruise on her daughter’s back during last year’s basketball season.
“She had no clue how she got it,” Jakki said.
After some blood work was done, the doctor gave some shocking news.
“When he came into the room, I knew something was wrong,” she said.  “A normal (blood) platelet count ranges from 300,000 to 400,000. At that time, it was 17,000.”
Aryanna was then tested for an entire week at Wesley Medical Center in Wichita. Although doctors thought it might be leukemia at first, they eventually diagnosed her with IAA in April.
The “I” stands for “idiopathic,” meaning doctors do not know where it came from. This put her in a rare category. Typically, individuals develop this following chemotherapy or mono, but the 9-year-old had nothing in her past to give any such clues.

Treatment
After finding that none of her family members would be a match in a bone marrow transplant, the family chose a horse serum treatment. In order to keep her body from rejecting it, she must take medications that suppress her immune system.
“We're hoping that it works,” said Jakki, adding Aryanna's blood cell counts are up. “It's a very long process.”
The family chose this option because Aryanna wasn't transfusion-dependent yet. The family will not know that answer for a couple of months.
“A blood marrow transplant is a harder road than what we’ve chosen now,” Jakki said. “I hope that we don't have to go through that route, but it’s what you do for your family.”

Day-to-day changes
IAA and medications leave Aryanna with a less-than-normal routine. Doctors have allowed her to go to school three days a week for four hours a day.
“We don't usually hit that goal,” Jakki said.
It is hard for her to stand or walk for long periods of time, and she also suffers from nausea, headache and joint pain and swelling.
Aryanna played softball, basketball and soccer last year, all coached by her father. Now she is not able to run, let alone participate in contact sports.
All of this conflicts with Aryanna's tomboyish nature.
“That’s the hardest thing overall,” Jakki said. “She’s not able to do any of the activities she did before. That’s the hardest thing has a parent.”
In addition to the symptoms, she also must wear a surgical mask every time she is not at home because of her weakened immune system. Children at her school are informed and welcoming, but those in public venues are more curious.    
Jakki said that who look at her assume she has something they wouldn’t want to catch.
“It’s (Ayranna) that we’re worried about,” Jakki said.
“That’s hard for her because often it’s children that are the most curious. I know that she just smiles under that mask because she knows that that girl doesn't understand. She is just very understanding and knows they don't know.”

Registry drive
Saturday’s registry drive is just that — a register. No bone marrow will be taken. Instead, individuals will be swabbed with a quick sample from the mouth and placed on a national registry list. If a match is found, bone marrow can be collected through either a peripheral blood stem cell donation or a bone marrow donation.
Individuals must be healthy, between 18 and 55, weigh at least 110 pounds and not exceed a maximum body mass index (BMI) of 40.
“It is a commitment, and something I do want everyone to realize,” Jakki said.
Although some may be leery of donating, Jakki stressed the fact that it could save a life, whether it is her daughter’s or someone else’s.
“I think it’s really important that everybody realizes there are so many people that could benefit,” she said. “Who wouldn't want be able to be sore for a 24-hour period and save someone's life? That’s a pretty amazing thing for somebody to be able to do. That’s what I think the whole drive is for.”
If interested individuals cannot make it to the drive, two options are available. A do-it-yourself kit can be sent through DKMS. Bethany College in Lindsborg also is having a registry drive from 10:30 a.m. to 1:30 p.m. on Monday in the Levin Room.
Donations received at the drive and events leading up to it will go toward DKMS, the largest bone marrow donor center in the world. Funds will be used to cover the $65 cost to register individuals.
Daycare will be provided for those who need it. The process is anticipated to take around 15 minutes.

Community support
This event is being preceded by a series of events throughout the Lindsborg community aimed to promote awareness and funding for Aryanna and others who share the same need.
“It's just totally amazing,” Jakki said. “The community has totally embraced us and our entire family.”
Students at Soderstrom Elementary held a coin drive that raised $2,089.73. A local business added another $1,000, which was given to the Nagy family.
“The kids were so cute, bringing their piggy banks and saying, ‘I'm gonna give this to Ayranna, I wanna put it all in,’” said Sue Pihl, the school nurse who has spearheaded the registry drive.
“It’s an honor to be able to help her,” she said.
Smoky Valley Middle School raised about $2,500 with its coin drive and Marquette Elementary School has also joined the bandwagon this week.
During Lindsborg's bi-annual Hyllningsfest, there was an information booth with buttons and orange bracelets (her favorite color).
During their free period at the end of a school day, Smoky Valley High School students dispersed flyers throughout the community for reminders of the upcoming drive.
SVHS student groups and other volunteers also had a bake sale and football tailgate to raise money for the drive.
“It gives you a lot of faith in this younger generation coming up that they're so willing to help,” Pihl said. “That is so heartwarming that they wanted to help so much.”
Pihl said many voiced their disappointment that they were not old enough to donate and vowed to get on the registry list once they turned 18.

Classroom love
Support also is seen in Aryanna’s fourth-grade class. On days when she is well enough to attend, she is welcomed with hugs, cards and notes in a special journal their teacher sets out.
“When she comes, they’re all so happy to see her,” said fourth grade teacher Cindy Cople. “The kids always have something to give her.”
One day, one of these gifts was $18 sealed in an envelope with her name written in large letters. Students from the Soderstrom had found wild gourds, sold them and a given the money to help their friend.
“They’re really caring and compassionate kids,” Cople said. “(Aryanna) acts just like any other normal kid. She just takes it in stride.”
Pihl has observed Aryanna’s positive attitude as well.
“Her attitude is so good,” she said. “You would not know she’s in that much pain.
“She's so excited to go to school. She's a smart little girl. She is just as sweet as her picture.”

Saturday's event
All volunteer slots are filled for Saturday's registry drive and Pihl expects to see at least 100 to 200 individuals.
“We have a lot interested in it,” she said.
Those who show up also likely will see Aryanna herself, who plans to sell lemonade at the event.
“She is very excited,” Jakki said.
Money raised at her booth, along with all other donations, will be given to DKMS unless otherwise specified to the Nagy family.
More information about Ayranna and the event can be found at hw.smokyvalley.org/lysell/aryanna/Welcome.html or search “DKMS Bone Marrow Registry Drive” on Facebook. More information about DKMS can be found at dkmsamericas.org.