Middle Schooler Recovering After Surgery To Treat Very Rare Condition

An 11-year-old Middletown girl who recently underwent life-altering brain surgery is recovering.

Paige Renson, a student at Maple Point Middle School, is recovering at Children’s Hospital of Philadelphia (CHOP) after undergoing a major surgery earlier this month to stop life-threatening seizures caused by Rasmussen encephalitis, a very rare neurological disease that features an autoimmune disease that can cause deterioration of a child’s brain.

The surgery that took place earlier this month effectively cut connectivity between the two hemispheres of Paige’s brain to stop the seizures that had overtaken her life.

Stacey Kwiatkoski, Paige’s aunt, said the girl’s parents had to make the decision for her to undergo the functional hemispherectomy surgery after other treatments did not work. The long-term impacts of the procedure will come more into view after extensive rehab, but partial paralysis and trouble walking and navigating stairs are among the issues that could last. She will become reliant on her right hand and right leg for use and to balance.

Paige has made significant progress in just a few weeks and aims to return to school this fall.

“Her surgeon at CHOP told us miracles happen every day and we’re seeing it,” Kwiatkoski said.

The family has started a GoFundMe page to help collect funds to make upgrades to Paige’s father and mother’s homes to help her stay safe and navigate the residences. As of Thursday morning, about $8,500 of the family’s $10,000 goal has been reached.

“Both parents houses have limitations and she needs to move around the house safety,” Kwiatkoski said.

She further stated any additional funds that are not used will be donated to CHOP.

Ashlee Vi Photography is helping out by offering photo sessions to help with fundraising for the family.

Paige has been in touch and met with Lower Bucks County resident Christina Santhouse, who had a similar procedure more than 20 years ago as a child after suffering with Rasmussen’s encephalitis. She has gone on to find a career, get married, and have a child, Kwiatkoski said.

Paige’s parents first began to notice leg tremors when she was about five. The tremors turned into head pain and later seizures that worsened over time.

Kwiatkoski explained that Paige’s parents tried the various treatments and learned they could either let impacts from the condition get worse or perform the brain surgery.

“They said, ‘she’s gotta have this because it’s the only way to save her life,’” Kwiatkoski said.

When asked to describe Paige, Kwiatkoski said she is a little girl who is lots of fun and who loves to laugh.

Paige’s family is overwhelmed with support from the community.

“We’re so thankful for all the support and overwhelmed by the support from strangers,” Kwiatkoski said.