T-shirt fundraiser for Greensburg girl battling rare disorder

(GREENSBURG, Ind.) – A t-shirt fundraiser is underway for a Greensburg girl battling an extremely rare disorder. 

9-year-old Myla Speer was diagnosed as an infant with  Sturge-Weber syndrome (SWS) which is a rare neurological condition. The condition impacts about 1 person out of every 20,000 to 50,000.

Speer and her family will be traveling to Boston Children’s Hospital several times over the next few months for testing and a major surgery. 

“This surgery is called a hemispherectomy which will disconnect the two hemispheres of her brain, the affected side is the right side and it has been the source of her seizures and stroke-like episodes. The doctors believe this could finally free her from the struggles of these episodes,” said her mother, Molly. 

That operation will take upwards of 6 hours and will be followed by weeks of intense rehabilitation in Boston.

Proceeds from the t-shirts will go directly to Myla and her family to offset the mounting medical and travel costs. 

The deadline to order the shirt is December 15 and you can get more information and purchase by clicking here.