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Ellie McGinn

Gene/Diagnosis: DARS2

Type of Disease: Ultra-rare Mitochondrial Disease caused by an DARS2 mutation also called Leukoencephalopathy with Brainstem and Spinal Cord Involvement and Lactate Elevation (LBSL).                         

Current Age: 13 years old

Symptom Start/Age of Diagnosis: Started with symptoms at 3 years old and was diagnosed at 3.5 years old.

Current Symptoms: Ataxia, hand tremors, impaired gait.

Prognosis: Unknown. 

Interventions: Mitochondrial cocktail of COQ10, Vitamin C, Riboflavin and Carnitine

If you or your family is affected by LBSL, please contact the A Cure For Ellie Foundation at or you may visit their social media pages below.

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Ellie's Story

Ellie appeared healthy at birth and initially met all her developmental milestones. However, at around age 3 her parents noticed she wasn't as coordinated as other children. She began falling and experiencing pain in her feet. After a nine month odyssey, her parents finally received the formal diagnosis of LBSL (Leukoecephalapothy with Brainstem and Spinal Cord Involvement and Lactate Elevation) - also known as DARS2.

Ellie loves animals, enjoys horseback riding, swimming and hanging out with friends. She hopes to one day be a veterinarian.


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