Coal City family’s home ‘looks like an ICU;’ help needed to get accessible van

A Coal City family is raising money for an accessible van to transport their severely disabled young adult and teen to doctor appointments.

Anthony Pens, 27, and Alyssa Pens, 15, two of Danny and Sherry Pens’ children, both have heredity spastic paraplegia type 35 and require around-the-clock health care. Both are medically fragile and nonverbal, and their condition is progressive.

“It looks like an ICU in our living room,” said Gina Pens, 26, Anthony and Alyssa’s sister.

Gina serves as Alyssa’s primary caretaker, while Sherry cares primarily for Anthony, who is “medically complicated,” said Dr. Mary E. Keen, who works in pediatric physical medicine and rehabilitation at Northwestern Medicine Marionjoy Rehabilitation Hospital in Wheaton and cares for the siblings.

Both Anthony and Alyssa have gastrostomy tubes. Anthony also has a tracheostomy as well as an ileostomy, Keen said.

“The only time [Anthony’s] been out was November, when he had to get his feeding tube changed. And we had to get an ambulance for that.”

—  Gina Pens, 26, of Coal City, Anthony Pens' sister

Their disease is so rare that only 51 people in 19 families are documented in medical literature, Keen said.

Gina created a GoFundMe page to raise money for the accessible van, but the page is struggling to find supporters.

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

Because of the lack of transportation, Anthony has been in a car once since “he got really sick in 2021,” Gina said.

“The only time he’s been out was November, when he had to get his feeding tube changed,” Gina said. “And we had to get an ambulance for that.”

Alyssa, whose disease progressed much more quickly than Anthony’s, also has scoliosis that is worsening, which may eventually require surgery, Sherry said.

Sherry said she still can transport Alyssa in the old family van. But that, too, is getting more challenging as Alyssa grows, her condition declines and her parents age.

“It’s also getting harder to pick Alyssa up and move her to chairs,” Sherry said.

The family also could use some respite care, just to address their own needs, or for someone to stay with Anthony when they need to take Alyssa to her appointments, Gina said.

“But we were denied for home health,” Gina said.

Consequently, many appointments with Keen are virtual, Gina said.

“Anthony also has a doctor that comes once a month,” Gina said. “And [Anthony and Alyssa] also have palliative care.”

The palliative care providers also visit Anthony and Alyssa monthly, Gina said.

Gina said she has two other siblings who don’t have the rare disease. It was not immediately apparent in Anthony and Alyssa, she said.

Doctors simply considered their development a little “slow.” Over time, they lost their abilities, she said.

Gina said Anthony and Alyssa are happy and smile often.

“It’s just that they can’t communicate,” Gina said. “Like if Alyssa is crying, we have no idea what is hurting her. In her head she is probably trying to tell us. But she has no way to tell us.”

Gina had previously turned to GoFundMe to help with medical bills, but the effort has raised less than half of the $20,000 she requested. When the fundraiser stalled, the GoFundMe page was taken down, Danny said.

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

To donate, visit gofund.me/3ea52c75.