Downers Grove Girl Loses Battle With Rare Disease

DOWNERS GROVE, IL — After a nearly decade-long battle with the same rare genetic disease that claimed her older brother's life, a young Downers Grove Girl has died of complications of Batten Disease. Laine VanHoutan, 12, who died Tuesday, was first diagnosed with a type of Batten Disease in 2009, just five months after her older brother Noah's diagnosis.

Luckily, Laine's twin sister, Emily, was never diagnosed with Batten Disease.

Noah passed away on March 26, 2016, just a month before the FDA approved the first drug to be used effectively to buy time for patients against the aggressive symptoms of Batten Disease, which always proves fatal.

Batten Disease, or Spielmeyer-Vogt-Sjogren-Batten Disease, is a debilitating condition that affects the nervous system and usually begins in children younger than 10 years old. Its effects include total vision loss, mental impairment, worsening seizures, and severely compromised motor skills.

After Noah's diagnosis, the VanHoutan family started Noah's Hope to help advocate for victims of Batten Disease and to fund research into the incredibly rare illness. Through Noah's Hope, parents Tracy and Jennifer Farnaus VanHoutan have spoken at multiple FDA hearings and conferences on Batten Disease, its research, and treatment.

At one conference in 2014, Tracy VanHouten spoke about how painful it was to watch Laine speak about how scared she was of becoming increasingly ill like Noah. Shortly after, Laine lost the ability to speak and see.

After Laine's death on Tuesday, Tracy VanHoutan, made a touching Facebook post thanking the community for their ongoing support and celebrating his daughter's life, which was cut painfully short.

He wrote, "[Laine] was at peace and pain free and quietly drifted off to sleep to begin another adventure, free of her tired body. We are heartbroken but we know she is in a better place: able to do all of the things she could not do here on earth for so many years."

Noah's Hope is sponsoring an annual 5K Cupcake Classic on May 20 to raise funds to combat Batten Disease. To learn more about Batten Disease and to find out how you can contribute, visit the Noah's Hope website.

>>>Image credit: YouTube, Tracy VanHoutan