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Patient Spotlight: Meet Lainey

“With HopeKids, we can get out of the house and do things without worrying about being exposed to as many germs since they’re so good at limiting exposure to those concerns. It is the only place Lainey can regularly see kids that are in wheelchairs and/or have a vent/trach like her. HopeKids is awesome!”  –Heather, Lainey’s mom


Chris and Heather, Lainey’s mom and dad, know the importance of good care. Their daughter, who was born with campomelic dysplasia (CD), a severe disorder that affects the development of the skeleton and reproductive system, just turned 6. However, 95 percent of children with CD don’t live to age two.

“We are lucky to live in Minnesota where we have excellent health care options and support like PHS. We view all the little things as milestones for Lainey. Every little bit she grows usually makes her a little more stable. We are fortunate she is still with us,” knows Chris.


Diagnosed with ‘failure to thrive’ and spending a number of weeks in the hospital after birth, Lainey started to really thrive when she got home. With Chris able to stop working and stay at home with her, she’s been able to live a full life surrounded by family and everyday activities while on a vent and CPAP/BiLevel.

“We do a lot of gardening. She loves to ride her trike. She’s pretty mobile: she has a walker and is really good at driving her power wheelchair around, getting in and out to play. She’s proficient in sign language, but when she got her voice, she was much more excited to talk and is vocalizing a lot now,” says Heather. Lainey is also in school five days a week, where she socializes and works with a team of physical and speech therapists.

IMG_2477When she isn’t at home or school, Lainey and her family love to attend HopeKids MN events such as Twins games, movies, and any other activities the organization might be hosting. HopeKids provides ongoing events, activities and a strong support community for families who have a child with a life-threatening medical condition. Through this organization, children and their families attend activities like Wild games, plays, rock climbing and much more — all while restoring excitement and hope back into their lives during what is likely a difficult time.


“We know we’ve beaten the odds so far,” say her parents. “It’s never far from our minds how quickly things could turn. That’s why we try to make the most of every day we have with her.”

So as they let her lead them on her journey, along with her sister Bani, they’re along for the ride and enjoying the adventure. It’s certain to be an amazing trip.

Originally published: September 3, 2013

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