Our New Normal [s] » Our little family's realization, that there is no normal

Vivia’s Story pt. 1

The Martinez family is now facing another new normal. Read about our first new normal.

*DISCLAIMER: Before I say anything, I also want you to know, this is the doctor’s diagnosis only- not God’s promise for her, so to us, these are just facts- and we are believing for God to bring about his promise for healing to her body. We don’t know in what way God will bring the healing, but we know he will. And we have already seen her defeat the odds in many details. And the last several months have included us researching every last bit of info, and every treatment option, literally known to man, at this time.

Vivia has been diagnosed with a rare, serious autoimmune disease called Juvenile Dermato-myositis that came out of nowhere. Dermato = SKIN, Myo = MUSCLE, Itis = INFLAMMATION.

IT IS NOT CONTAGIOUS, it is genetic. She has had these strange scales on her knuckles for almost 2 years now, we brought it to our pediatrician’s attention a LONG time ago, and we also noticed a reaction to being out in the sun- like hives, almost- and long story short, after a long journey of misdiagnosis, and dermatologist visits, have found out that it is not just a skin thing.
It’s her immune system attacking her body. And it wont just stop at her skin. If not stopped, it will move into her muscle, and could even possibly move into her digestive system and other organs.
Untreated, has lead to fatality.

Treatment…

We have decided to pursue an integrative treatment which includes several fronts of attack. One, a natural and preventative (whole-istic, if you will) one, along with (two) the conventional one.

Conventional treatment, even though very aggressive, is almost 100% effective in getting these kids into remission. (But it’s not without it’s side effects). It’s kind of like a “shock and awe” approach- bombard it and weaken its effects right away, and then a sustained attack over time. If her inflammation goes down quickly, she may not need the length of treatment they are initially saying she will. There’s so little known about this, but we are really blessed that we detected it so early on. Some parents find out about it because their child wakes up one morning and can’t move- with no prior symptoms.

If you want to find out about it more, you can go here: http://curejm.com/
This is the site I have found with the most up-to-date information.

There is also a short video made by the folks at Cure JM that does an excellent job of explaining what we are facing. You can view it on my blog here:

(Updated Feb 18, 2012) And/Or you can watch the video I made that shows Vivia’s journey so far, and also explains about the condition: HERE:

 

After a long journey, Vivia checked into Shands Children’s Hospital in Gainsville on a Friday in May  for 3 days of aggressive IV treatment, which will be followed up by more hospital admissions for more infusions of Steroids, and IVIG which is a transfusion of healthy white blood cells, and also methotrexate which is a very harsh chemotherapy med.
I tell you all of this too, because a side effect of these types of meds can cause pretty obvious changes in her appearance, and really obvious mood swings (another way of saying that these kids can get really mean).

When she is out of the hospital for the initial transfusion, she will have to go back at least once a month for at least 6 months for outpatient transfusions. – so they say-

On the nutritional/internal (whole-istic) front, we have gone gluten-free, and processed-foods-free, and are also doing some natural treatments that heal and repair damaged cells ON A CELLULAR LEVEL- which is really cutting-edge stuff- through frequencies.  (Essential Oils and Emotox treatments).

This is all pretty sudden, and overwhelming, but Vivia is full of life,  a Victorious one, as her name claims. She is an amazing little conqueror. And if all goes well, this can be behind us pretty quick as long as there are no complications. As I type this, she’s sitting on the floor behind me, making up a song about the animals and the letters of the alphabet- and singing with a happy heart at the top of her lungs! This will not crush her. Of that, we are confident.

Specific Prayer Requests:
1. Vivia’s Miraculous Health and full recovery from this- quickly
2. Strength for our family as our life is drastically going to have to change
3. Miraculous financial provision bc this has already gotten very expensive
4. Emotional/Spiritual health for Vivia and the rest of our family
5. That she will defeat the odds and not experience all these harsh side effects they are saying she will.

I’m sure I will have more prayer requests as time goes by, but I think that’s it for now. And please feel free to email me back, or leave a comment if you have any questions.

I think it is important that everyone interact with her the same way they normally would- she’s not made of glass or anything, she may have days where she’s too weak to participate in some things, and she pretty much can’t be in the sun- at all (this is a trigger for her disease to flare up), but she is the same Vivia she always was. And as far as she’s concerned, so far, she thinks this is all about “getting rid of her rashes” because she hates them.

So, if anyone starts throwing words around in front of her like “disease” or “sick” she won’t really know what they are talking about. So, please use caution in how you talk about it with your kids, too. We are very careful with our words, especially around her, bc we want to always speak life. And in no way, with our lips, be in agreement with this thing, spiritually. There may come a time that we need to discuss the whole picture with her, but hopefully, that day will we will be speaking about it in past-tense- when this is all over.

 

 

June 6, 2017 - 11:11 am

Darci - I’ve had a sinking suspicion for the last couple of years that my son may have JDM…may i ask how your daughter was diagnosed? Did she have a muscle biopsy?

July 26, 2017 - 4:14 pm

freedomg12 - Hi Darci!
We did not have a muscle biopsy. We were sent to a Dermatologist who did a biopsy of the papules on her fingers.
She was found to have a connective tissue disorder of unknown origin and because of the other symptoms I described, thankfully the derm had heard of it before and sent us to a Rheum. right away.

The best piece of advice I have for you, mama, is to not stop until you get answers. Sometimes you have to persist in your questions, change doctors, or become “that annoying mom” to get people to pay attention to your kids needs.

All the best – I pray you find out what it is soon!

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