11-Month-Old Girl Diagnosed with Rare Genetic Disorder That Affects Fewer Than 100 People: ‘Breaks My Heart,’ Mom Says
Yahoo News UK • • health
Key Points:
- Kayleigh and Ryan Dunn’s 11-month-old daughter, Lorelei, was diagnosed with the rare genetic disorder CACNA1E, which affects fewer than 100 people worldwide and causes frequent seizures, mobility challenges, and the need for a feeding tube.
- Lorelei’s neurologist, Patrick Lawlor, described her condition as one of the most severe he has seen, noting she experiences multiple seizure clusters daily and has no head or upper body control.
- Kayleigh shares Lorelei’s health journey on TikTok, receiving widespread support, especially following Lorelei’s G-tube surgery in January, and remains hopeful their story encourages others to seek neurological testing.
- The family faces financial challenges due to Ryan’s recent back injury and the long wait for special needs insurance approval, prompting a GoFundMe campaign to help cover medical expenses.
- Despite the difficulties, Kayleigh remains committed to caring for Lorelei full-time while working part-time, expressing her determination to do everything possible to improve her daughter’s condition.
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