In 2012, when Lucy had just turned 2, she started experiencing severe behavioral changes. At first, we thought she was entering a rough toddler phase. But when she became increasingly defiant and violent, with spells of nonresponsiveness (absence seizures), we decided to seek help.
In the beginning, the doctors thought she had a behavior disorder, but after being checked thoroughly, that theory was thrown out. It wasn't until 6 months later, when debilitating headaches crept in, that a neurologist was sought.
Lucy underwent a sedated MRI in the fall of 2013, the results of which showed a small pineal gland cyst. Although doctors were fairly certain that the cyst wasn't the cause of her headaches, they remained uncertain about what the cause could be. She was placed on several medications for the treatment of migraines - none of which helped with the symptoms.
Two months later, Lucy was rushed to the emergency room when she had her first non-absence seizure. She was shaking (like a hard shiver) all over and couldn't use her arms or legs. She ended up being admitted into the Epilepsy wing at the hospital for a 24 hour EEG and it was found that she does, indeed, have Epilepsy.
Here we are, nearly a year later. Lucy's seizures and headaches have not only been unresponsive to the numerous treatments tried (6 prescriptions, 3 OTC medications, 2 biofeedback methods, meditation and yoga for pain management) but some of the medications have had extreme adverse effects including: strong, violent episodes against her siblings and us, days on end of weepiness and inconsolable sadness, unprevoked irritability, and loss of appetite (in an already thin child).
On top of those effects, she dealt (and deals currently) with the following daily:
ringing in the ears, upset stomach, sleeplessness, night terrors, headaches so painful she cannot move, light sensitivity, sound sensitivity, auditory hallucinations, visual hallucinations, blurred vision, vertigo, and seizures.
We have turned to 10 different children's hospitals nationwide looking for help, as well as utilizing the resources available to us here in Pittsburgh.... all without progress.
As one of our last resorts, we have scheduled an appointment with a rare disease specialist in Ohio. He has rave reviews and testimonials from patients who suffer with symptoms due to everything from cancer to autism. His staff was warm, friendly, and answered all of our questions with confidence during initial contact. They seem quite hopeful that he will be able to not only help, but successfully manage Lucy's symptoms and enable her to have a normal life.
The only problem is that this particular doctor is an out-of-network provider, which means he must be paid fully out-of-pocket at the time of service. His hourly rate is $369/hour, with the first 3 appointments typically lasting 2 hours each. This number is only for office visits - it does not factor in the fuel to get there and back, the treatment costs themselves, and/or any tests that may need done.The cost of this is a LOT for us to take on right now, especially given that we are still paying for tests and appointments through her current neurology team (a running total of nearly $20,000 so far - AFTER insurance has paid their portion).
If you could, please consider giving to Lucy's treatment fund. We would not ask for the help if we genuinely did not need it. Lucy is a wonderful little girl and we just want her to be well again.
Thank you so much!
Amy & Dave Ruiz
**Any money donated over what is needed for current treatment will be used toward her bills from previous doctor visits/tests/treatments.**
- Donald Benson
- Antonio Ruiz
- Mickey Perez
- Joseph Caldwell
- Drake's Ducks
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