Coal City siblings with rare disease receive outpouring of support

Two Coal City siblings with an extremely rare disease have received such an outpouring of community support that their family now has opened a bank account to receive donations.

Anthony Pens, 26, and Alyssa Pens, 14, both have heredity spastic paraplegia type 35 and require round-the-clock health care. Their father, Danny Pens, said the family desperately needs an accessible van.

But Danny Pens said their 2015 van cannot be converted and estimated that a new van with the conversion could cost $70,000.

Danny Pens said that if Anthony Pens has a medical emergency, the family must call an ambulance, which is frustrating.

“We should be able to take him in a van,” Danny Pens said.

Gina Pens, 24, the sister of Anthony and Alyssa who serves as Alyssa’s primary caretaker, turned to GoFundMe to help with medical bills. Gina Pens raised less than $4,300 of the $20,000 she requested two years ago, and the fundraiser had since stalled.

But in the week since The Herald-News and The Morris Herald News published a story on the Pens family, GoFundMe donations have skyrocketed – and that doesn’t include the people who have contacted the family to donate directly.

Danny Pens said individuals, businesses and churches all have reached out. Gina Pens agreed.

“I still have a lot to get back to,” Gina Pens said. “We’ve had so many.”

Gina Pens said she’s even working with a local business to host a fundraiser.

Right now, the family is overwhelmed with the community’s generosity.

“We’re very much appreciative,” Gina Pens said.

Dr. Mary E. Keen, who works in pediatric physical medicine and rehabilitation at Northwestern Medicine Marionjoy Rehabilitation Hospital in Wheaton, previously praised the family for the outstanding care Anthony and Alyssa Pens receive at home.

Keen previously said that every time Anthony went to a specialized nursing home that accepted patients on ventilators, he’d still end up in the hospital every two to three weeks.

“He’s very medically complicated,” Keen said. “But his mom is doing such a wonderful job. He’s not had to go into the hospital once since his mom began caring for him at home. To me, that is evidence of what a good job she is doing by herself.”

An account now is open at Old National Bank, 20 S. Kankakee St. in Coal City. Gina Pens said people can make out checks to “For the benefit of Anthony and Alyssa Pens” or “FBO Anthony and Alyssa Pens.”

To donate online, visit gofund.me/72a82356, gofund.me/62496896 or gofund.me/e2ba96e7.