JourneyCare Decades Dance helps 'incredibly special' pediatric hospice program

After a typical pregnancy and successful labor, Cathy McCann and her husband, Adin, received devastating news in 2010.

The Des Plaines couple's 6-week-old daughter, Sadie, was diagnosed with Aicardi syndrome, a rare genetic disorder that occurs only in girls and can cause multiple seizures each day, severe developmental delays and low muscle tone. Most girls with Aicardi Syndrome are non-verbal and unable to walk.

"I was shattered," McCann said. "I remember telling my family that I wasn't strong enough for this life. But as shattered as I was, I knew had to find the strength to give Sadie the best life possible."

Sadie's pediatrician referred the family to JourneyCare, a nonprofit hospice and palliative care organization, and its pediatric All About Kids program. The program serves children in 10 Illinois counties including Cook, Lake, DuPage and Kane. JourneyCare also offers inpatient centers for adults and children who need around-the-clock care in Barrington, Arlington Heights, Woodstock, Glenview and Chicago.

While Sadie's medical needs were tended to by a team that included a doctor, nurses and a social worker, All About Kids also provided experts to care for the girl's mind and spirit. Sadie received music and massage therapy, volunteer support and had a dedicated Child Life Specialist - a professional who helps patients and their families deal with fears and emotions surrounding serious illness through play and self-expression - on her team.

"I wish I could convey to you the full extent to which JourneyCare's All About Kids program helped, but I would be talking for the next two days," McCann said.

McCann will share more details of her experience in Arlington Heights on March 10, as the keynote speaker at the annual JourneyCare Decades Dance benefit. The event, which this year will celebrate the spirit of the 1960s from 6 to 11 p.m. at Arlington International Racecourse, raises funds for the All About Kids program.

In addition to McCann's keynote speech, area residents who join the Decades Dance can don their grooviest retro wear and compete in a costume contest, join in a live auction, dance to the music of Libido Funk Circus and more.

McCann said she is thankful for events like the Decades Dance, which helps fund a program that doesn't always sit at the top of the public's mind, but is critical for parents like her.

"JourneyCare's home visits gave me peace of mind knowing that Sadie's health was being monitored," McCann said. "Not only would they check her vital signs, pulse, oxygen, and listen to her lungs, they would also discuss her care and answer our questions about upcoming procedures and issues with doctors. So often, our nurses went above and beyond."

The program was part of Sadie's life until she died in 2013, and McCann said she remains close even today with the team who cared for her daughter.

"I don't know what we would have done without them," she added. "I am grateful that the Decades Dance helps other families navigate this path and receive the support and strength provided by this incredibly special program."

JourneyCare Decades Dance: The Sixties

When: 6 to 11 p.m. March 10

Where: Arlington International Racecourse, 2200 W. Euclid Ave., Arlington Heights

Cost: $150 per ticket

Includes: Dinner, dancing to Libido Funk Circus, open bar, raffles, live auction, costume contest, photo booth


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