Kayleigh and Ryan Dunn’s daughter, Lorelei, has CACNA1E
Credit: GoFundMe
NEED TO KNOW
- Kayleigh and Ryan Dunn’s 11-month-old daughter daughter, Lorelei, was diagnosed with the rare genetic disorder CACNA1E, which affects fewer than 100 people
- Lorelei experiences frequent seizures, lives with mobility challenges and requires a feeding tube due to the disorder
- Kayleigh documents Lorelei’s health journey on TikTok, where they receive support after the girl’s G-tube surgery in January
A mother feels heartbroken seeing her baby girl living with a rare genetic disorder that affects fewer than 100 people in the world.
Kayleigh and Ryan Dunn’s 11-month-old daughter, Lorelei, was diagnosed with CACNA1E. Due to this neurological condition, she lives with mobility challenges, experiences frequent seizures and requires a feeding tube.
Patrick Lawlor, Lorelei's neurologist in Michigan, described the severity of CACNA1E to local news outlet WXYZ, saying, “The lack of progress is something that really signals how severe her disorder is. Probably one of the most severe children I’ve taken care of. She has clusters of brief seizures. Sometimes 10 or 20 times per day.”
The Michigan mom explained that it's “even harder” because Lorelei has “no head control or upper body control.” Kayleigh added, "Even though we’re desensitized. It breaks my heart to see her like this."
Credit: GoFundMe
Kayleigh has been documenting Lorelei's health journey on TikTok, inciting an outpouring of love and support, including when she had a G-tube surgery in January.
"She took it like a champ, and I could not be prouder of her," Kayleigh captioned the TikTok video. "I cannot wait to get her home and comfortable in her own bed. But for now, I’m going to enjoy this quiet moment alone in our little hospital room, just the two of us."
Kayleigh told WXYZ that Lorelei, who enjoys bath time, is nonverbal, adding, “For someone who is nonverbal, she is very vocal.”
The mother is hopeful that their family’s story encourages other people to get tested for neurological conditions.
Meanwhile, Lorelei’s neurologist is hopeful about potential treatment options. “It’s possible it could improve her seizures, her development. It could be transformative in the best case," Lawlor explained. "I really admire her family and how well they take care of her."
Angela Munaco, one of the family’s close friends set up a GoFundMe to help the family cover Lorelei's medical bills and other costs.
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“Shortly after her diagnosis, Kayleigh’s husband [Ryan] suffered a serious back injury at work, leaving him unable to work for several months,” the GoFundMe said. “Between his recovery, endless doctor appointments, and the long wait for state approval of Lorelei’s special needs insurance, Kayleigh had no choice but to step back from full-time work. She now works part-time when she can, balancing her career with being Lorelei’s full-time caregiver.”
Kayleigh told WXYZ, “I just want [Lorelei] to know I tried everything I can to make her better.”
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