We Love Alexa/CF Expense Fund

Our beautiful daughter Alexa is 24 years old and has Cystic Fibrosis, a life threatening disease that affects mainly the lungs and digestion.  It leads to persistent lung infections that damage the lungs and limit the ability to breathe over time.   This disease does not necessarily show any signs to the outside observer.  If you see or meet her, you wouldn't see that anything is wrong.  But this disease is real and it's vicious an the damage progresses over time.  She also has Cystic Fibrosis related diabetes which is somewhat common, but keeping blood sugar under control is important to maintaining lung function.  In spite of these challenges, Alexa maintains a pretty positive attitude most of the time.  

Alexa is such a good patient and does the necessary breathing treatments 2 or 3 times a day to clear the thick mucus clogging her lungs to prevent infection.  She does everything the doctor tells her to do.  Yet, in the past year and a half, she has been in the hospital 4 times for 2 or 3 weeks each time.  This has been emotionally very difficult for her and our whole family.   When your child looks at you and says she can't breathe, the feeling is terrifying, but we do what we need to do.  Her doctor is out of our home state , so each hospital stay means we are away from home for weeks.  This also means that we incur the expenses of traveling including hotels, food, airfare and/or gas.   More importantly, health insurance companies don't cover what they used to and, as a result, we are left with a mountain of medical bills for each hospital stay.  They are currently totaling almost $10,000.  She had a recent stay that I have not received bills for yet, so I am concerned that the amount is growing!  We pay what we can, but it has become overwhelming and impossible to keep up.  

We want to do whatever we can and try every option available to get Alexa healthy and keep her that way! As parents, we would all fight to do anything within our power to protect our children!  When we have been able to try natural alternatives, Alexa has responded well, but none of those things that would help her ( vitamin IV therapy, homeopathic treatments, acupuncture, nutritionist to name a few) are covered by insurance.  We have to pay out of pocket for these alternatives and it is very expensive, so we cannot do all that we would like to do.   There is a naturopathic doctor in our local area who has been doing some innovative treatments and we know this would benefit our daughter, but the first visit with detailed lab work is $1500.   Alexa deserves to lead the life of a 24 year old- having fun, going out with friends, having a steady job that she enjoys, the things many of us take for granted.  These alternative treatments can help her to achieve that and not being able to provide all of that is heartbreaking.

We need to remove this financial stress from Alexa and our family, so we are asking for help.   Our hope is that we can  cover our current and some of our upcoming medical costs and also to give Alexa the chance to receive the other types of natural therapies she needs so there won't be a need for such frequent hospital stays.  Even with the help of her doctor, Alexa  is fighting both lung and digestive symptoms right now and I feel like we are just frozen without sufficient resources to explore other alternative treatments. We desperately want to do all we can to support her health and raising this money would provide enormous relief and hopefully a better future for my sweet girl.
  • Donna Partipilo 
    • $50 
    • 27 mos
  • Anonymous 
    • $100 
    • 27 mos
  • Anonymous 
    • $100 
    • 28 mos
  • Carmen Paul 
    • $50 
    • 28 mos
  • Bobby Brian 
    • $100 
    • 30 mos
See all

Organizer

Michele Ciancimino 
Organizer
Las Vegas, NV
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