Reiley's Butterfly Brigade

Reiley's Butterfly Brigade

Reiley has had quite the life since being born on May 10, 2006. Reiley has spent over 62 weeks of her life at Phoenix Children's Hospital.   Early on we knew something wasn't right with her, she was unable to drink or swallow well, she was a poor sleeper, she didn't like to be cuddled and would get easily over-stimulated. At four months old we noticed that she would suddenly stare off and then snap back and this was the beginning of our journey.  At 7 months old on Christmas she was admitted to Phoenix Children's Hospital and was very ill. Things continued to get worse from that point on. Reiley was delayed and very small and diagnosed with "failure to thrive" at 8 months old. 

For the next several years we travelled around the country trying to find answers to Reiley's Mystery Diagnosis. After much searching we found answers.  Reiley has a very complex form of Mitochondrial disease. She is more complex than most doctors have ever met. She has so many other issues. She has a duplication on Chromosome 12q13.31,  EDS type III, Bipolar with psychosis, ADHD combined type, Anxiety NOS, OCD,  Periodic Limb Movement Disorder,  Sleep Disorder, Sleep  Apnea, a heart murmur, a pineal cyst, a neurogenic bladder, a neuropathic motility disorder, 100% G-tube fed, Common Variable Immune Deficiency, autonomic dysfunction, and after almost 7 years of going to doctors about what I believed were seizures, she was just medically diagnosed with Epilepsy. 

On June 20, 2012 Reiley lost one of her very best friends to Mitochondrial disease, Mylee Grace. Mylee, Reiley, and Kylie were what we called the "Mito musketeers" not only were they all battling this devastating disease, but were the best of friends.  Reiley has many friends with Mitochondrial disease and sadly they are all progressing in their diseases in one form or another.  

Our HOPE is for a CURE, it may not be in her lifetime, but this is why we wish to set up a fund in Reiley's honor to help support TGen in finding a CURE that has taken away so many precious lives and effects our family so deeply.

Click the donate button above to make a donation to this fund.

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Donation Information

You may also send a gift by mail to:
TGen Foundation
445 N. 5th Street, Suite 120
Phoenix, AZ 85004