The Warren Family

Helping a family through Huntington's Disease

Terry Warren of Rock Falls, Illinois, defines himself as “somebody who’s struggling anyway on a day-to-day basis.” When his young wife was diagnosed with Huntington’s disease, he became mom, dad, nurse and breadwinner; trying to keep his family together, the growing mountain of bills paid and life as normal as possible for the 11 years Jenny lived with this debilitating disease.

Eventually, when she needed 24-hour care, he had to place her in a nursing home. When she was eligible for hospice, he got additional care for her. But when his VITAS Healthcare social worker suggested that there was financial help for his family through VITAS Community Connection, Terry was elated.

The memory of that moment causes tears to appear as he recalls, “That was a lot of weight off my shoulders.”

‘This is what we do’

For Susan Sien, VITAS Community Connection (VCC) administrator, it’s all in a day’s work. But she too was moved by how well VCC was able to meet the Warren family’s needs.

“This is the kind of thing that we love to do; it's the kind of thing we were started to do,” she says. “The family had two young sons, the wife obviously in the end stages of Huntington's, and Mr. Warren wanted for him and his sons to stay with her those final weeks. He had used all his vacation time and was not able to take paid time off of work and was worried how he was going to be able to get by for those few weeks, a month—however long it might take.

“And so we were able to immediately jump in and pay his rent for the month. We paid a couple of utility bills. We were able to provide a VISA debit card so he didn't have to worry about food and necessities for his sons during that time period. We even I think paid for a pair of eyeglasses for one of the sons. It's a perfect example of what we're here for.”

VCC receives donations from grateful families whose loved one was a VITAS patient, or from family and friends of patients who want to donate in the patient’s name, as a kind of living memorial. VCC sees to it that money donated in honor of a patient in a certain town or city stays in that community, helping needy families coping with the end of life and other extraordinary hardships. This creates a “community connection” between the deceased and the place he or she called home.

Helping families focus on what's important

As for Terry Warren, he says, “I can’t express how thankful I am to all those people that have donated and have helped me and my boys out.”

For families living paycheck-to-paycheck, the diagnosis of a terminal illness puts them teetering on the edge of financial ruin. Knowing they have people who are willing to help keep them afloat financially throughout the duration of the illness allows them to focus on what’s really important, spending quality time with their loved one.

VITAS Community Connection is a 501(c)3 charitable organization. 100 percent of every donation goes to local patient needs and community partners. All contributions are fully tax deductible as allowed by law.