Arianna S. Failla

Arianna’s Story

For some of you that don't know her story....this is Arianna...she was born September 22, 2010. At 3 months old, she began having seizures and was diagnosed with a rare disease called Tuberous Sclerosis. Tuberous Sclerosis is a disease where benign tumors (tubers) grow on any organ in the body including the skin. It is the biggest cause of epilepsy and autism along with developmental delays and the list goes on. Arianna has the tubers in her brain, heart and we recently found out that she has them in her kidneys. At a year old, she was hospitalized with a brain aneurysm which needed coiling. She then needed to relearn to crawl and walk again. She was also still having seizures, which meant more medicines to try and help control them. She is on 6 different anti-seizure medicines and she continues to have seizures everyday. Last February, she had her 1st brain surgery, in May the 2nd brain surgery, August the 3rd brain surgery, January she had her 4th and we are getting prepared for the 5th. She has many of these tubers in her brain and they can only remove 2 at a time, so this is a process. She is still continuing to have multiple seizures everyday, but is showing more signs of development. She is now becoming more aware of her seizures, and is freighted by them, which is heart breaking to watch. We have been thinking about getting her a service dog for her seizures for quite a while, and now is the time to do it. Not only will it alert us before she has a seizure, it will be there to comfort her during and after her seizure. That is AMAZING!!!! It will help her and us at the same time. Unfortunately, these dogs are extremely expensive.  They are usually over $20,000 not including training travel and care of dog & so are the added expenses incurred with having a child with this disease, the money will not only go towards the purchase of the dog but also help this little girl throughout her difficult life as needed.

Arianna’s Angels
Tuberous Sclerosis Complex
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