Brooklyn Center nonprofit offers support to children with complex medical conditions

Crescent Cove in Brooklyn Center provides respite care to children with complex medical conditions. It is one of only three children’s hospice and respite homes in the United States.

For the last several days, staff has been been caring for 3-year-old Savannah while her parents took a trip with her older sisters. It was their first trip since Savannah was born.

Savannah was born in May of 2019 with severe symptoms of a neuro-muscular disorder.

“She came home on hospice originally, we didn’t think she’d live very long,” said Jeff Helget, Savannah’s father. He explained they suspect it’s caused by a gene mutation. “She’s three-and-a-half now and we still don’t have a diagnosis, it’s a mystery disease.”

While her personality has bloomed, she’s also required round-the-clock care. They rely on nearly full-time, at-home nursing to help care for Savannah. She needs treatments to make sure her lungs stay clear, feeding assistance, help stretching out and moving, and frequent suction around her mouth because she can’t swallow on her own.

“It’s just constant watching and care,” said Lacy Helget, her mother. “There’s always an alarm going off for something.”

Jeff added, “It’s very demanding.”

Crescent Cove offers them, and other parents whose children have a shortened life expectancy, cost-free support. 

“They are taking 24/7 care for their children and they don’t know how long they’ll be doing this,” said Jenny Floria, the Crescent Cove manager of communications and engagement. “Because of that, it is really important for their mental health, their physical health, their ability to connect with other children in the home to be able to take a break.”

She added, “We can fully takeover the care of that child.”

They offer care beyond each child’s immediate medical needs. Savannah was treated to a spa day and she got her hair done, played with pets and went on swings.

“A lot of people might see Savannah and have a hard time seeing her for who she is,” said Jeff Helget. “She’s effectively fully paralyzed and can’t do anything for herself but she has a personality, she has wants, she has likes and dislikes and has her own ways of communicating with us. There’s a person there and that’s what we appreciate here, they see her that way. They see her the way we see her, as a full person who needs love and attention.”

Lacy Helget added, “It just gives us a breath to know there is hope that we can go do something without worrying.”

Crescent Cove has a waiting list so families are limited to 15 respite days per year.

The nonprofit has helped more than 300 families through its respite and hospice programs since the facility opened nearly five years ago. About 90% of their services are respite care, while the remaining 10% is end-of-life care.

“We know those same children will come to an end of life and for those families we provide an experience for them here,” said Floria. “We’re answering the door every aunt, uncle, grandparent who wants to visit, we are feeding the family every single meal while they’re here and we are providing spiritual support, healing touch and other experiences while they’re here so that it can be a beautiful and peaceful journey.”

Their programs are entirely funded by donations. Crescent Cove is hosting a fundraising gala at the RiverCentre in Saint Paul on January 28.