Kyra Billingsley.jpg

Kyra Billingsley

Gene/Diagnosis: IARS2 

Type of Disease: Ultra-rare Mitochondrial Disease caused by an IARS2 mutation.

Current Age: 4.5 years old

Symptom Start/Age of Diagnosis: Symptoms started at 9 months old. Diagnosed at 1 year old.

Current Symptoms: Non-Verbal, Global Developmental Delay, Hypotonia, Wolf Parkinson White (cardiomyopathy), Seizures, CVI, Immunocompromised

Prognosis: Unknown. 

Interventions: Feeding Tube, Speech Therapy, Occupational Therapy, PT, Medication 3x daily for seizures, pain & cardiac issues. There is no FDA approved treatment or cure. Intervention is based on symptom management. 

 

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Kyra's Story

Kyra was born a typical, healthy child, however she started to lose motor function around 9 months old.  She started having seizures and that started our search for her diagnosis. She was diagnosed with Mitochondrial Disease with a genetic mutation in the IARS2 gene. 

Kyra has had a very tough life due to her medical condition, but with the right medication and treatment she is now able to live a comfortable, happy life and even goes to preschool! She loves being around kids, swimming and snuggling. She is lucky to be on a drug trial for the past 6 months that is supposed to help people with mitochondrial disease and improve their quality of life. There is no cure for her disease and we are aware that this will take her from us at an early age. We hope and pray everyday for a cure for mitochondrial disease for Kyra, future children affected and for anyone living with mito.