After 3 tough months battling the insurance company to continue coverage for Daphne’s medicine (N-Acetyl-Cysteine) that may partially reverse her disease…
I WON!!!
Excitement is an understatement 🙌🏻
My last update on this topic was winning the appeal to get a 3 month courteous fill to give me time to fight them, many hours on the phone with various agents, trying to figure out the right form and process, trying to get the doctors office to do their part because in the end I can do all the work except complete the final paperwork, so annoying but thankful they stuck it through with me and I will be sending them a sweet 🎂 treat for being so sweet (a little exaggerated 🙄), but my dad always taught me “you attract more bees with honey”!
A special shout out to Paula at the insurance company.  I fell in love with the first agent I made an appeal with several months ago but Paula took it to a whole new level and really cared and took ownership in helping me.

You may think it’s easy but seriously some people and processes are setup just to be difficult just to make you quit, I swear.  

Follow me for a minute here…. 

Believe me it’s true, in my own job I see it and even play off it ( sorry not sorry sometimes) so that is just the case in other careers as well.  

One thing that has always given me the edge to not giving up are those people that say “Who’s going to own it?  Are you going to own it?”  They are saying this knowing good and well they should be the ones owning it but you being the better person, steps up and says, yes I will.

In the back of your head your doing this, because 1. You’re so good at it 😜, 2. You will learn valuable lessons along the way, 3. At some point in the future it will benefit you.

So thank you to all those who have done this.  You have gotten me to this point.  Thank you for teaching me how to help others want to do this as well. My rule in dealing with the insurance folks is to be nice, courteous, understanding, listen, be realistic in what I am asking for and take ownership of the issue.  Paula did all of those things and more.  She called me everyday when she said she would, to check on the status and she made the final step to get this approved happen!  Paula my dear, you have just made my dreams for Advocacy for Daphne’s Lamp a reality.  

I think this shirt was made for me and every other Mito mama I have met!

***It’s not my most glamorous picture but I will be honest I am usually in pajamas by 6pm and tonight squirmy little Daphne would not cooperate very well but that’s my life.

This is just the beginning, I am going to D.C to meet with Congress June 29th and I will be pushing for the next big thing.

Until I have to appeal again in another year, I am making steps to make this fight even easier, stay tuned for those details.

This is for my daughter Daphne and what the future of those involved in with #daphneslamp will look like. I don’t take NO for an answer and I will put up one hell of a fight, so get ready. Get on board with the movement it’s going to be BIG!

#mitostrong 💚 #daphnestrong

One thankful and Happy Mama tonight 😊


I am so excited!

Honestly it’s almost better than the unsupported sitting.


Daphne has FINALLY reached 20 pounds!

20 pounds 4 ounces to be exact

This is a huge feat with her disease and with all the sickness she has gone through recently.

She lost over a pound just a month ago which set her back to 18lbs.

Keep praying, sending good vibes or whatever you believe in because it is working.

As my mom says “Daphne is writing her own book!”

The other big part of this weight gain is I told the pediatrician we would start vaccinating again once she hit 20 lbs.

When we received her MRI results and diagnosis we stopped vaccinating do to the unknowns of how the mitochondria handles vaccines, especially the MMR (eek, just saying it freaks me out!)

I have always given both of my kids one shot at a time with plenty of time in between and this restart will be no different but things are going so well I hate to risk it.

I just love our pediatrician, I scheduled her shot appointment for next week with another doc b/c our normal doc was booked for the rest of the month and we are going to Disney at the end of this month and wanted to get the shot in her before visiting that cesspool of everything and I just received a call that our normal doc has made time for us since she knows Daphne best and would like to be the one doing the shot appointment.  Good Doctors ROCK!

Wish us Luck!

xoxo Desiree