Connie Fights Rare Lung Disease
WE ARE FIGHTING THE BATTLE OF OUR LIFE!
This fund is for Van Becker, and his wife Connie. I (Connie) was diagnosed in November with Mycobacterium Abscessus subspecies abscessus http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4229719/ It is so rare that the only option we have available to us is National Jewish Health in Denver, CO. The other option would be to travel to China and that is not in the real world for us.
After testing for drug susceptibility, my strain shows resistance to everything but Amakacin, Linezolid, and Impenem and highly resistant to Clarithomycin (main antibiotic used in combination to beat this beast of a disease) I am scheduled to be there from January 26 thru February 5th. Because everything is admiunistered as an outpatient our insurance requires co-pays of $30/special visit (I am currently scheduled for average of six per day), outpatient surgery for implant of port for intravenous treatments ($500.00) , plus IV theraphy several times a day. As you can quickly ascertain, our out of pocket will be catastrophic . A very good friend has offered to drive me to Denver and all of my appointments while taking care of me. NJH has setup discounted hotel rates, but even with those discounts we were looking at anywhere from $3599-4500, plus $35/per night for parking fees and some were off site, room service and eating out when I could tolerate it, laundry services and this quickly became impossible for us to do alone. I was able to locate a private owner, who has graciously allowed us to rent his property at a 50% discount saving us over $1000 just in hotel room costs. Because this is so drug resistant, my therapy will be for several years and will be continued at our home, with follow up visits to NJH. Our medical out of pocket expenses will end up being somewhere between $200,000-500,000 to complete treatment. Because of side effects of medication, I can have bilateral hearing lose with no chance of regaining, neurological peripheal disease, and many others that will mount up more expenses
I have been unable to work since November 21, 2015 due to fainting, dyspnea, chronic fatigue, inability to perform acts of daily living, so we lost about half of our income. Van has to work to ensure we maintain health insurance coverage. He will be flying out to Denver over the weekend to attend educational classes and how to care for me.
This campaign was started by a good friend, Luiz Carlos Botelho-Gomes. We are so humbled by his efforts, Cindy Downs selfless offering of driving me (local doctor would not allow me to fly) and taking care of me while Van is in St Louis working. Van has been a valued employee of the Wellbridge team for over 10 years, and a member of the fitness community for much more.
We are not the type of individuals that normally turn to others for help. But this is so far beyond anything we could have ever planned for.
So make a difference in someone's life and donate today, share our story to everyone you meet so they can have the opportuity to help, and most importantly pray for God to heal me and to set us on the path for the correct treatment.
To understand why I am fighting so hard to live take a moment to watch our video at:
https://vimeo.com/150974827
http://vimeo.com/151061694
https://vimeo.com/152008823
God Bless,
Connie and Van Becker
