Sister heads homeward

Ali Paris attended a school dance with all of her other ninth-grade classmates last April…. Ali Paris attended a school dance with all of her other ninth-grade classmates last April. Like most 16-year-old girls, Ali was very excited to go to the dance.

But there was one thing that set her apart from the other girls. Ali has a rare form of pediatric epilepsy known as Landau-Kleffner Syndrome. LKS can cause seizures and damage the brain’s ability to comprehend and produce speech.

Ali was born healthy, but lost the ability to speak and suffered a series of ear infections at age 2. Her family searched for the cause of the young girl’s medical problems. In 1995 she was diagnosed with LKS.

Ali’s older sister, Melissa, attended Pitt as a freshman in the fall of 2004. She transferred to the University of Maryland after her first semester at Pitt, in order to be closer to Ali, who lives outside of Philadelphia.

When Melissa was in the eighth grade, Ali had 14 seizures in 24 hours.

While their mother remained at the hospital with Ali, the then 14-year-old Melissa decided not to stay at home and cry.

A doctor told Melissa that raising money would help with LKS research and education.

So Melissa established the Ali Paris Fund for LKS Research and Education, a nonprofit, United Way Agency.

She arranged a middle school fund-raising dance, with the help of her school’s student council. The dance raised $2,000 for the organization, and proved to be just the beginning.

To date, the fund has raised more than $150,000 for LKS Research and Education.

Kevin Paris, Ali’s father, said that the money does not directly benefit his daughter. It goes toward medical education for the community.

During her time as a Pitt student, Melissa joined the Kappa Kappa Gamma sorority.

Kappa Kappa Gamma hosted a bowl-a-thon to benefit the Ali Paris Fund for LKS in April. Seven fraternities and 10 sororities took part in the event, which raised $1,280.

“I have my sister Ali, but now I have all these sisters,” Melissa said. “Kappa gave me the other side of sisterhood.”

Melissa said that she still keeps in touch with all of her Kappa Kappa Gamma sorors.

The Ali Paris Fund has held car washes, flower sales and 5K runs for the cause. It also hosts a “Ribbon and Hearts Dinner” every November to raise money.

The organization’s icon, a pink ribbon with two hearts, symbolizes that Ali will never be alone. One heart represents Ali; the other is the ribbon’s bearer. The tie in the ribbon signifies the strong bond that keeps the Paris family together. Pink is the favorite color of both Ali and Melissa.

The fund has a motto: “LKS takes away children’s words. Help us bring back their voices.”

The fund is working to educate the public on LKS.

During the summer of 2002, it was featured on “Kids Health,” a PBS documentary.

Melissa and her family have also spoken on radio and TV stations in order to teach the public about LKS.

According to Kevin, Ali is doing well, though she still has seizures on a weekly basis.

Melissa has noticed a positive change in her sister’s state of mind since her health has improved.

“Her spirit is doing better now that she’s not as sick,” Melissa said.

Ali currently understands everything said to her, but she is unable to communicate back.

Ali has a computer that helps her express what she is trying to say. She keeps smiling and inspiring admiration in her big sister.

“She is definitely a trooper,” Melissa said.

Melissa has written a memoir on her situation titled “So Good to Hear Your Voice,” which she hopes will be out by the end of this year. The fund would like to distribute it to neurologists across the country.

“Kids who have siblings with disabilities can read it and realize they’re not alone,” Melissa said.

Donations can be sent to the Ali Paris Fund for LKS Research ‘ Education at P.O. Box 1288, Kulpsville, Pa., 19443.