Vivia and Rio's Medical Fund

Dear Friends and Family:
The time has come that we need to ask for help. 
As many of you know, we have been gifted with three children, two of which are (each) literally one in a million and have different serious RARE conditions.  I apologize for the length of this post, but it is necessary to show why we are asking for help.  We didn't the first time we dealt with all of this, but now that we are facing a second round (with both children) we are reaching out to ask for help sharing this burden.  The timeline below exists to show the extent of the burden and the unfolding of the story. If you don't have time to read it all, it's ok - I'll just summarize it here:
Viv is back in the hospital. Rio just had a second surgery and may need a third. We're exhausted. We're strapped. We're carrying an enormous expense. We could really use help. Scroll to the end to see a breakdown of costs. 
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YOU CAN HELP!!
1) GIVE whatever you can. No donation is too small and can even be done anonymously (tax-deductible) - if even just all our FB friends gave $5 we'd be well on our way.
2) SHARE on social media
3) EMAIL this page - gofundme.com/https://www.gofundme.com/WeLoveTheMartinezes
- to your family + friends.
_______________________________________

Here's a timeline:ROUND ONE:
2008: Our son Rio was born and discovered to have a rare condition called Micropthalmia with blindness in the right eye, along with several other mid-line cranio-facial birth defects like a cleft lip and gum.
- Costs incurred: Higher than usual Hospital Bills for extended hospital stay and extensive testing as they thought his brain may not have developed fully.
Age : 1 day

2009: Rio receives his first (of many) prosthetic eye pieces so that his skull will properly form. He needs new custom-fitted prosthetics every few weeks since growth is very rapid at this age.  These are called conformers. He also needs to be hospitalized for sedated MRI's to determine the extent of the birth defects and course of action. 
- Hospital Bills, Prosthetic Eye Bills
- Age 3 mos

2010: Rio has his first surgery to correct his cleft gum.
Rio receives his first PAINTED prosthetic eye. And a second one by year end.
- Hospital Bills, Prosthetic Eye Bills
Age 18 mos.

2010: Vivia, our oldest began to have a rash on her face, knuckles, and elbows that would not go away. We took her to a dermatologist expecting a steroid cream that would clear it up - instead we were told Vivia had a rare life-threatening chronic disease called Juvenile Dermatomyositis - that is likened to an allergy to the sun, although it is so much more than that. And that we needed to pack our bags and go straight to Shands hospital in Gainesville FL, (2 hours away) because there are no doctors in Orlando equipped to handle this disease.
Age of DX - 4 yrs
Rio - Receives 3 more prosthetic eyes because of rapid growth.
Age 2
Astronomical Hospital Bills, now x 2

2011: Vivia begins first of many hospital admissions for aggressive treatments consisting of daily High-Doses steroids, IVIG white-blood cell transfusions, Methotrexate (chemotherapy) transfusions and weekly injections, as well as a plethora of daily meds.
Begins several therapies. Age 5
Rio receives 2 more prosthetic eyes. Age 3 
Astronomical Hospital Bills, Prosthetic Eye Bills

2012: VIVIA: Treatments/ Therapies continue Age 6 
Rio receives 1 -2 more Prosthetic eyes Age 4
NOEMI was born - ( NO ISSUES PTL!!!)
Astronomical Hospital Bills, Prosthetic Eye Bills

2013: VIVIA: Treatments/Therapies continue Age 7 Vivia is granted a MAKE A WISH
Rio receives 1 -2 more Prosthetic eyes Age 5
Astronomical Hospital Bills, Prosthetic Eye Bills

2014: VIVIA: Treatments/Therapies continue Age 8
We finally get the word that we can begin weaning her off the steroids
Rio receives 1 -2 more Prosthetic eyes Age 6
Astronomical Hospital Bills, Prosthetic Eye Bills

2015: VIVIA: Treatments/Therapies continue Age 9
Flare from weaning too rapidly, up the meds again change meds to CELL CEPT. 
Rio receives 1 -2 more Prosthetic eyes Age 7
Astronomical Hospital Bills, Prosthetic Eye Bills

2016: Treatment continues, weaning still... and finally wean from FINAL drug that she was on. But no remission YET... 
We finally pay off the LAST hospital bill for Rio's surgery and birth complications. 

2/2017: VIVIA IS FINALLY IN REMISSION!!! Age 11
Rio receives 1 -2 more Prosthetic eyes Age 8
Medical Bills, New Prosthetic Eye Bills, still paying off Vivia's 

RECENT UPDATE:
aka: ROUND TWO

11/2017: Rio - second surgery for cleft GUM. In researching for the surgery he needs another MRI which discovers yet another birth defect previously undetected. He's missing part of his skull. The Sella Turcica. More specialists are needed to determine course of action and if another (dangerous brain) surgery is necessary. 
Vivia: It was discovered that there was oversight in her daily preventative care regimen (sunscreen and sun protection) and signs of disease flare begin to surface. 
Hospital Bills again

2018:
 -Vivia: On visit in January, Doctor says Vivia is no longer in remission and needs to begin treatment ALL OVER AGAIN.  Admitted to Shands Hospital for treatment by end of Jan. 

- I lose my job due to company cutbacks. (Unrelated yet relevant)

- Vivia is accepted into a JDM study in Washington DC and is able to see the world's leading DR's on JDM. (Trip to DC to see these docs).
- Rio: receives 1 more prosthetic eye and is told he needs orthodontics to further correct cranio-facial issues. Course of action for several other issues still to be determined. 
Hospital Bills x2 again. 

SO WHY GO FUND ME NOW? 

We're exhausted. We're strapped. We're carrying this unexpected enormous financial burden. We could really use help. 

 The first time we dealt with all of this (Round one) killed us financially. We really wanted to do the right thing and avoid medical bankruptcy which most people do. We were also in the beginning stages of a really big DEBT FREE lifestyle and had paid off almost all of our consumer debt when all of this happened. 
I wish I was kidding, but the toll it took the whole family was drastic.  We lost our house last time (had to sell bc we couldn't afford it anymore), and before we see ourselves in another devastating financial position, we thought we would reach out and ask for friends and family and those that love us and Vivia and Rio to help. 

It took us literally years to payoff all the bills from round one which included me having to take on extra jobs in addition to the full-time job of caring for my special needs kiddos. 
With the latest turn of events, I will not be able to work full time again anyway (at least for awhile) because it really is a full time job dealing with all of this. You'd be surprised how many hours I waste just waiting on hold with insurance companies and medical providers. 


_______________________________________

YOU CAN HELP!! 
1) GIVE whatever you can. No donation is too small and can even be done anonymously (tax-deductible) - if even just all our FB friends gave $5 we'd be well on our way.
2) SHARE on social media 
3) EMAIL this page - gofundme.com/https://www.gofundme.com/WeLoveTheMartinezes
- to your family + friends.
_______________________________________

Here is a breakdown of why our goal is $20k and how we are applying the funds as of 3/17/18 (any donations that came in after that have not been applied yet).