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Jessica MasonerSeated in the center, Jessica Masoner is shown with her parents and her sisters, Carly, 13, and Candice, 15. Students at Bonner Springs High School and Basehor-Linwood High School recently held a fundraiser for Jessica, who has Lafora disease.
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Fundraiser for Jessica
Fundraiser for Jessica
Bonner Springs High School and Basehor-Linwood High School have partnered to raise money for an 18-year-old girl who was diagnosed with a rare form of epilepsy.
This disease, called Lafora disease, is a fatal autosomal recessive genetic disorder. Those with the disease only live two to 10 years after diagnosis and children with Lafora are not expected to live past the age of 25.
Jessica Masoner was diagnosed at the age of 15 and as this disease is extremely rare, she is one of 20 cases recorded in the United States. There are only 200 cases in the world.
“Jessica’s life was just like any other 15-year-old teenage girl,” Masoner’s mother, Sheri Boatright, said. “She went skating, hung out with friends, rode a bike, and went to school.“
On the morning of April 26, 2011, Masoner was getting ready for school with her two younger sisters, Candice and Carly, when she fell to the ground and had a Tonic Clonic seizure. In the following weeks, Boatright noticed that her daughter was having trouble walking and was constantly feeling dizzy and shaky.
Masoner started having myoclonic seizures which causes jerking of the hands and feet and these seizures continued and happened constantly.
When taken to a doctor, Boatright was told that Masoner only had generalized epilepsy, which was not fatal, and with the correct medication, the symptoms would cease.
After a month of taking the medication, Masoner was very depressed and acting hostile. Masoner’s sight was decreasing and reading was becoming difficult for her. As characteristic for Lafora disease, Masoner was experiencing severe cognitive changes.
After a second electroencephalogram, a test that measures and records the electrical activity of the brain, the doctor discovered Masoner had strange and rare brain activity which was only seen in progressive myoclonic epilepsy.
The doctor then ordered the test for Lafora disease.
Masoner’s family lived over an hour away from the doctor’s office so the initial diagnosis was given to Boatright over the phone.
“This was the most heartbreaking and devastating news a parent could ever hear,” Boatright explained. “I remember crying and waking up Jessica’s father, however, I don’t think it was quite real to me yet. It took a few days to really sink in.”
Within six months of the first seizures, Boatright was bathing, dressing, and just helping Masoner with everyday activities. Masoner couldn’t walk 20 feet without assistance from someone or a wheelchair and it was hard for her to eat. She was also having lots of absence seizures.
Now, two and half years later, the family has had to change everything they know to adapt to what their life is now. Masoner cannot talk, she gets fed though a G-Tube for nutrition and is incontinent. She also suffers from dementia and hallucinations.
“What is really sad is that Jessica is very much aware of what is going on, she doesn’t know the details of her illness, however she knows what she is no longer capable of doing,” Boatright said.
Since Masoner requires 24-hour care, Boatright quit her job of 10 years to care for the needs of her first daughter. This causes an understandable financial stress. The family is not able to buy a handicapped accessible van to take Masoner to doctor’s visits so they must resort to borrowing larger vehicles from friends and family. They also lack the extra money to take the family out for a day to get a break from the bleak reality.
Due to the countless doctor’s visits, the family moved to Roeland Park in late 2011. Still being new to the area, Boatright lacked the support of her community that she had hoped and seen with other Lafora cases.
Hearing this, Bonner Springs High School teacher and neighbor to Masoner’s aunt, Jennifer Schlicht decided to bring this story to the BSHS Student Council.
“[Masoner’s aunt] had asked so many organizations for assistance but just couldn’t get any,” Schlicht stated. “People [at BSHS] are always willing to help.”
When this idea was brought to the student council, it took everyone by surprise. Senior class vice president, Kennedy Bizzell, explained that it was heartbreaking.
“Jessica was just like us,” Bizzell said. “And one day [everything] was taken from her.”
When deciding which basketball game to hold for the main part of the fundraiser, the students thought of many different factors. They looked at what game would have the most turnout as well as what game would occur before winter break.
After choosing the basketball game on Dec. 17 against the Basehor-Linwood Bobcats, Bizzell and fellow student council member, Jordan Jackson, ventured to Basehor-Linwood High School to speak with the student council adviser, Stephanie Harris, and a few of the senior student council members to discuss the idea.
Harris explained that the student council members and she were very excited to do the fundraiser because they could see how Jessica and her family's lives would change with the extra funds. She continued by saying that the members were very supportive of this idea and were happy to participate.
After both student councils were on the same page, they set out making signs, thinking of spirit days, and finding sponsors for the anticipated game, now called the “Purple out” game.
The goal for both schools was $6,000 to pay for a handicapped-accessible van and to help reach this goal an anonymous donor, nicknamed the Angel Donor, promised to match any money raised by both schools up to $5,000.
Recently, the Angel Donor was revealed to be none other than Kansas City’s "Secret Santa." Secret Santa is known to pass out money to strangers just to show that kind-hearted people are still in the world. Bizzell and others hope that with the help of this donor, they will meet their goal.
Jessica’s family is still in shock over the fact that students and teachers who have never met Jessica are so willing to do all the hard work that goes into a fundraiser.
“There are no words that can really describe how grateful and happy I was to learn about the wonderful teacher and these awesome teens doing this fundraiser for us,” Boatright said. “I will forever be thankful.”
Shelby Mata is a student journalist at Bonner Springs High School.