Reiley Lynn 13 years old and this is her story.

Problems started at birth for her. She didn't have a proper swallow, didn't like to be held, and would get easily overstimulated. She started having seizures at 4 months of age. She had her first inpatient hospitalization on Christmas night at 7 months old. The ER doctor remarked how very floppy she was, and that started us on the diagnostic journey. 

She had a G-tube placed after trying to feed her orally and via a NG tube, at 13 months of age. She also had a muscle biopsy done which suggested she had Mitochondrial Disease or a Fatty Acid Oxidation disorder (which falls under the Mito umbrella). Further testing was not done properly and we didn't have a confirmed diagnosis. 

She was one of the first 50 children to be accepted and seen at the National Institutes of Health in the Undiagnosed Disease Program in 2010 at the age of 3 years and 9 months. 

Six months later, we were told that she was a carrier for complexes II + III with low IV and had a variant of a Fatty Acid Oxidation disorder called SCAD. 

Reiley has many other diagnoses, including a primary immune disorder, demyelinating neuropathy, developmentally delayed, complex partial seizures and mental health disorders, just to name a few. She has spent over 100 weeks of her life inpatient, has had countless procedures/surgeries and has traveled the country seeing specialists. She is tube fed 20 hours a day, and has a port-a-cath where she receives IV fluids every night and IVIG to help with her immune deficiency. She takes 12 medications daily, wears a CPAP at night with bled in O2 for her severe obstructed sleep apnea. She can not attend school in the building as her immunity is so compromised, so school comes to her. She has very limited contact or social time with her peers.

This is why research in Mitochondrial Disease is so imperative. To have a clear cut way to diagnosis the disease, as at this time, it is not cut and dry. There are over 200 KNOWN types (who knows how many unknown). It is frustrating to not know exactly the cause of your child's ill health without a clear answer. That, coupled with doctors who can't seem to agree, leaving you lost and hopeless, and you have no idea what the future may or may not hold.