Benefit being held for boy with Batten Disease

Submitted Photo Grant Lawson was born with Batten Disease and has been facing medical issues that come with it during his entire life. Now at the age of six, the problems are continuing to grow but he still has a smile on his face.

Having a child or young family member faced with hard medical problems isn’t easy for anyone. For the families, it can be costly and stressful to give the child what they need to live with what has happened. For the Lawson family, the disease that has affected their six-year-old son is Batten Disease.

On Saturday, at Lawdawgs Bar and Grill in Ruthville, a benefit will be held in honor of Grant Lawson and his family to raise money to help with the large costs that come with the disease.

Batten Disease, a rare, fatal genetic disorder, greatly affects the nervous system in the bodies of the children diagnosed. Most children are diagnosed between the ages of five and 10, according to the National Institute of Neurological Disorders and Stroke. Symptoms range from as mild as personality and behavior changes to slow learning to clumsiness to as severe as seizures and vision problems.

As those who have the disease age, it begins causing cognitive impairment, loss of sight and motor skills, and worsened seizures among other problems. As care can be costly, Dan Lawson, owner of Lawdawgs and uncle to six-year-old Grant Lawson, has decided to host the benefit to raise as much money as possible to make things a little easier in the hard time his family is facing.

“Grant was born with a genetic disease called Neuronal Ceroid Lipofuscinosis and often referred to as Battens Disease. It is a fatal neurodegenerative disorder. Grant has never walked or talked and is fed with a feeding tube,” Lawson said.

Grant has faced a hard path with a large variety of complications such as pneumonia, something he will soon be going to appointments with a pulmonologist to try to help with the issue and to strengthen his lungs. Lawson hopes to raise enough money to help with all those costs.

“Through all the struggles and doctor appointments, Grant remains a happy boy with a smile on his face,” Lawson said. “May 18th, he turned six years old. He recently graduated from kindergarten from John Hoeven Elementary.”

The benefit will begin at noon where smoked brisket and pulled pork will be served along other food items for $8 along with bouncy castles, a mechanical bull, if weather permits, a silent auction and a live band starting around 7 to 8 p.m. There will be a bike run as well beginning at 11 a.m.

COMMENTS