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Lucy’s lessons

Lucy Humbles was just a tiny, 2-week-old infant when doctors diagnosed her with lissencephaly. They told her parents, Lori and Eric, that this illness is caused by a deletion of the 17th chromosome and can lead to difficulty swallowing, failure to thrive, muscle spasms, seizures and severe psychomotor impairment.

Born last July, Lucy spent the first 14 days of her life being treated in the neonatal intensive care unit at Lurie Children’s Hospital, a JourneyCare partner.

Lucy’s physicians soon recommended palliative care with JourneyCare to Lori and Eric, and the Cary couple chose to initiate the extra medical and emotional support.

The Humbles quickly met with JourneyCare Pediatric Nurse Case Manager Alida Yee and Child Life Specialist Jennifer Fieten and Lori said she felt immediately that she “had someone on our team.”

“Alida and Jennifer were involved from the beginning and I was able to trust the people at JourneyCare so quickly,” Lori recalls. “We left Lurie with appointments for six different specialists and JourneyCare was our advocate. They not only helped us deal with Lucy’s serious symptoms like acid reflux, the possibility of seizures and struggle to gain weight, but they helped me prepare for decisions I would be facing about my daughter.”

Eric and Lori Humbles and their daughter, Violet, were able to better focus on making memories with baby Lucy, thanks to support from JourneyCare.

Thanks to this support, Lori, Eric and their oldest daughter Violet, who is now 4, were able to focus more on making memories as a family. That meant the couple could enjoy days like the ones where Violet would arrive home from school or an outing, then rush to Lucy’s crib to talk to her baby sister about her day.

After just five short months with her family, Lucy’s life ended. Though Lori says her family was very private while Lucy faced her disease, a Facebook friendship inspired her to share her grief on a blog and help her community, too.

That Facebook friend also lost her twin sons to lissencephaly, and the mother had created a day of service in honor of them on May 12, their birthday. She called it “12 Acts of Kindness for Luke and Liam” and encouraged family and friends to do 12 kind things for others – big or small – to honor the twins.

Lori was inspired. That is why she launched her blog, lucyslessons.com, and hosted her own day, “Ten Acts of Kindness for Lucy,” on what would have been her first birthday, July 10. She even started her own Twitter hashtag, #lucyslessons, which allowed them to see what others were doing to help others.

“Of course the first place we headed on that day was JourneyCare,” Lori said.

Lori and Violet visited one of JourneyCare’s Inpatient Hospice CareCenters and donated pizza and drinks to the care teams and patient visitors, while also leaving behind toys for pediatric families who come to the CareCenter.

Amid hugs and tears with the care team, Lori honored her daughter while thanking those who cared for the infant – and those who care for other patients and families every day.

“I will never be able to say how much JourneyCare helped us,” Lori says.

– By Elisabeth Mistretta, JourneyCare Content Specialist
Originally published in Together to Care, Fall/Winter 2016