Sunday, October 27, 2013

Getting back (to) Our Lives...

We decided write about our future intentions on this particular blog. 

Letters, emails, Pm's, Social Media sites etc...these have been the different outlets that we have used to further our daughters fight and now, the fight of others. At the same time, we have also been overwhelmed both in the best of ways and the worst of ways.  
"It was the best of times, It was the worst of times." ~ A Tale of Two Cities

When Facebook was just catching fire; this is around the time that your mom or grandmother started to realize that the "InterWebs" was so confusing, but Facebook was "fun" because, now they could keep in touch with you and never really have to go any where else for info about you. 
Of course, that's also what Facebook wanted too. 

Leah caught the best of Facebook, because there were no limitations placed on how many people you could reach. That is when we, along with Leah's Angels (Volunteers that came to Leah's aid and ours)  around the globe swept in and took advantage of the social media giant to get the word across the world that there was a child that doctors could not figure out what she had. The local news agencies found out about us and our connection to the costuming communities and within a few months reporters from all over the world were reporting about "Princess Leah" (despite what was reported, we named Leah after my sister NOT the Star Wars Princess). 
Her story went viral. It was a media mess at first, and if it wasn't for the efforts of the Media Coaches at UCLA we would have gone crazy.
Things got so out of hand that we had to change Leah's name in the Hospitals computers (to Jaina Solo... LOL). I had reporters calling me up on my phone (and my number is private) asking me if they had found out what Leah had and so on. Meanwhile, security had to be placed for Leah as well because we had people breaking in to our room to get glimpse of our Baby. We had several of those. Primarily people that were not "all" there. I remember waking up and there was a woman who claimed that Jesus told her to come and rub these oils all over Leah to cure her. I'm not saying that I didn't believe her, but if you were there in the room with me, you would know what I meant.  She had seen the room number in an interview we did on one of the many TV stations and she decided to come and deliver this message.
Her heart was in the right place, and as a person that belongs to a minority faith that has dealt with prejudice, I try hard to understand others when it comes to rituals and customs. Unfortunately, you have to draw the line when it comes to your daughter who is trying to be in a germ free environment in the Intensive Care Unit. I immediately took care of it and asked her politely to leave. This happened with others as well.  Along the way, we dealt with a few obsessive "fans" of Leah that were trying to contact us and going to great lengths to find where we lived and so on.  Creepy.
That's when we realized that we were now under a microscope. Luckily, we also had people that volunteered to help us keep those at bay. And it sort of helped.

Around that time, facebook became the main place to get up-to-the-minute reports on Leah. Our Blog was now more of a supplement. Granted, we didn't know what we were creating at that time. Meaning, it also became a bit of a chain for us that was hard to get away from, especially when we needed that time to ourselves. There was a duality. On one hand, there were people donating via a Facebook auction that got started by a member of the costuming community and friend named P.J.. He raised more than a few thousand to help Leah and us with our Hospital Bills and to cover things like groceries and gas as well. This would never happen without Facebook (we're still talking about the Facebook of 2 years ago). We had another friend start a donation page too.
For us, it was about connecting to our close family and friends that lived outside of of L.A. too. We didn't have to go and repeat all the details over and over again. Some were upset about this. They wanted their own personal report...they were family. What they didn't know was, we were getting a few thousand emails, Letters, Pm's, requests, etc and it was starting to overwhelm us again.It was also emotionally draining to keep repeating some of the scary details that were happening to our little angel. 
Eventually, things relaxed a bit and we would only deal with a few hundred, however, it was taking a lot of our time away from Leah to answer all of these. We had to limit our time and find a way to regulate things and still keep people informed.  It was really about LEAH all the time. Meaning, Frani and I were never Facebook fans.But, we were so desperate to find out what was going on with Leah. What was it that was causing Leah to have all those seizure like movements (among other things we won't get into here)?

As time went on, Leah's main support page went from having a few hundred to a few thousand. Leah's story was touching the hearts of many around the world.
We understood, how social media was helping us, but it was also causing privacy issues that still continue today. 
Eventually, celebrities got involved  and George Lucas. They catapulted Leah's cause even further and with the help of several amazing costuming groups it kept the motor running. 
Meanwhile, we were still dealing with a few people that were not mentally well, that were professing that some Deity contacted them or that Leah had telepathically communicated with them and they NEEDED to see Leah. Some told us they did it via "remote transmission".  So yeah, it was a little weird for us some times. Mind you, this is when Leah was still living.  We even had someone claim that got Leah out of her coma (they professed this on their fan page!)...which was interesting being that she was in a drug induced coma and Leah was "awakened" when the drug was taken away. 
As time went by, others joined the cause, and re-ignited the fire. People from all over were praying for Leah still, regardless of what Faith they were a part of. We connected with people from all over and of course we were curious to why they had made that connection with Leah.
Some became like family. Others, we were close to became even closer to us. And, like in many cases you really do find out who your real friends and family are when things like these happen.
All in all, we never really had too many problems aside from a few people taking advantage of Leah's situation.  This is something we had to let go of because at first, we were confused and hurt that people would take advantage of a child in need. They will have to live with themselves. 

We never expected things to get so BIG with Leah. Never. We never expected people to continue to work for Leah even after two years of ups and downs. No one was EVER expected to fight by our side even when Leah was finally diagnosed with Mitochondrial Disease. I remember people posting about it, and most were of course, not happy with it. A few were making matters worse for us emotionally because they were posting about how bad the disease was, as if we didn't know it already. The diagnoses was a nightmare for us. But, as we usually did, we pulled ourselves back up and those Angels that fought by our side were the turbo to keep going. We will never forget those that kept the fight going even when we were emotionally exhausted. 
As time went on, those closest to us, began to help insulate us. They shielded us from those trying to take advantage of us, or keeping people away so that we could regroup from the latest trip to the Intensive Care Unit. 
By then, Facebook was starting to implement more rules regarding privacy (or rather lack of privacy). We had already learned how our privacy was being invaded, but for Leah's sake we tolerated situations. 
Meanwhile, we were dealing with this dreadful news and trying to cope for Leah (feel free to read the blog if you haven't). Again, Social Media helped, but, by this time, we were so incredibly emotionally exhausted from Leah's trips to the E.R. and also trying to balance out our crazy careers in the Entertainment Industries, that we felt it necessary to start regulating and weening ourselves away from Facebook.  Our posts were less frequent and we began to try and use the blog again for most of the info on Leah. We were adjusting to things.  Frani was climbing the ladder at work and making "it" happen. She went from an assistant to now being a Producer for a hit PC game. I was lucky that I was able to do my music and voice-overs from my home when I could get away from Leah's smile (and unfortunate medical issues). 
By the end of Leah's life, we were fortunate to have a great set of Nurses that cared more about helping Leah than getting on the internet or arguing about their pay.
So life was starting to move forward in some ways; and in other ways, it was still the same, especially for Leah. Leah seemed as though she was fighting hard many times. In fact, doctors were always amazed at her strength.  We also drew from Leah's strength as parents. I think many people around the world did, as we are now finding in the new documentary about Leah and those that connected have.

So where are we going with this (aside from teaching others in our boat how to deal with Social Media sites)?  

We have decided that we will be taking a long break from Facebook. Not so much with the new non-profit Foundation we are starting, but with us. We don't think we're that exciting to begin with so we will be regulating our posts to being about those wonderful people out there like all our Volunteers (we call them Angels..thanks Mary for starting that page) and mostly about the children that we must STILL continue to FIGHT for. We've learned a lot in these 2 plus years (it feels like ten). And one of the MANY things we learned too, was how much we need to have our own that we can heal from our loss.


As we wrote in the above, privacy will be a key ingredient in our future plans. But we also need time to re-group. That means healing above all. And it also means getting ourselves into a position where we can take care of ourselves...our hearts...our souls...our love. Corny but true.

Healing doesn't mean disappearing completely, it just means, moving to the side a little to let ourselves breath and give others a chance to do the same for their children.

We made the mistake to just keep going at full speed with the Gallery showings, Foundation stuff, the documentary, that has taken us all over Europe and will take us to other places as well. But, I think everything sort of hit us like a ton of bricks while filming our documentary in ROME. I hadn't really seen Frani let go. I joined in. We both broke down. I can't imagine what the neighbors were thinking. But, looking back I'm glad we did. You see, it was the first time we had to really process things. We had entertained ourselves with all these events that we were using to keep the flame going; NOW for the other MITO kids. We wanted to Pay-It_Forward! Our hearts were in the right place and we were successful with these events and such, but, our lack of processing time was our emotional downfall. 

There we were. In one of the most beautiful countries and cities and we were clenched in each others arms...crying...dealing for the first time with the intensity of reality...nothing we were doing would bring Leah back...nothing. 
It had been hard enough at the funeral and dealing with hundreds of people wanting to be there for us, but we also found that even those close to us, were also trying to deal with her death, but they were turning to us for some consolation.  Looking back, we should have put a stop to this since we have always appreciated those that stuck with us through think and thin, but it wouldn't have been selfish to ask them to get counseling rather OUR shoulders to cry on.  We needed our space. This was and is an indefinite situation.   

So, we'll be involved from the Foundation level with social media, but as for our own personal lives, we'll probably go back to using our blog to share a few things from time-to-time.  We figure, our friends wouldn't mind using that old fashion thing called email either. 

What you WILL see on this site...

We'll be showcasing other Mito Families and their children, keep you posted on the documentary and those we interviewed via this blog and Youtube. We'll be around, but we'll be more like shadows than the real stars our... MITO kids and volunteers. They are the heroes... not us.

We have a lot of work ahead of us...

We will also be opening our Foundation page sooner than later. Our foundation will have information for Mito families on several subjects that revolve around having MITO. Including special "capsules" to help them out, interviews with specialists and doctors about MITO and a few therapists that will help us/them cope with the constant emotional challenges that MITO families have to go through.

The "May The Force Be with Princess LEAH" page on facebook will eventually turn into the Princess Leah Foundation page.  We'll spotlight other families and volunteers there briefly and then lead you to this blog for more info on that event or person. 

This blog will still be called the same and attached to our official PLF website. 

We're still learning about things so you may have to bare with us a bit while we try to convert all our ideas into one fine oiled machine/foundation.

We are not officially set as a non-profit at this time, however, you are welcomed to send in donations to the 

United Mito Disease Foundation or Mito.Org in Leah's name. 

If YOU would like to become a Volunteer please contact us at:

We'll have one of our Angels contact you and let you know how you can make a big difference in a childs or adults life with MITO.

Thank you for taking the time,
 Zev & Frani

Lighting a candle for Leah at Westminster Abbey

on our way to see the Queen's crib


sketching a cavalry guard

The National Gallery in London

Zev's drawing at the Tate Modern 

We remember Leah and all the mito angels at Tate Modern

Leah doll with us at the Eiffel tower

A Leah doll we received from one of Leah's supporters, she traveled all over Europe with us

Educating people about mito in Versailles

Zev and Frani on the Ponte Vecchio


The Colosseum in Rome

At Marina Grande on Capri Island

Chair lift to see the entire island

Il grotto azurro in Capri


Meeting the 501st Spanish Garrison in Madrid

Zev and Mireia, a 3 year old with mito

Maria, her mom

Frani and Maria

Leah's memory lives on

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