Monday, February 10, 2014

Updates on the documentary and foundation

PERU, Lima

We were in Lima, Peru recently, for about 2 weeks, visiting my family as we were gathering for my grandpa's 80's birthday. I have family around the US and also in Lima that we hadn't seen in a long time, and none of whom we'd seen since Leah's passing. It was a great chance for me to be able to reconnect with my family after this tragedy. I was initially nervous, as I had a pretty rough childhood/adolescence, especially with my aunt but I was pleasantly surprised at how amazing it went. I really enjoyed spending a lot of my time with my family, and going to the beach, and even just hanging out with my uncle, my cousin and my grandpa for a whole afternoon, instead of sightseeing as much as we did when we went to Europe (this was Zev's first time in Lima).  Who knows when I could spend this much time with my grandpa again, or my cousins and aunts and uncles. My other aunt, has defied cancer a couple times already, my sister's husband just found out he is cancer free after almost a year of treatment, one of my cousins also struggled a lot with his own medical issues as an infant and child, so our family has seen a lot of hardship, so I appreciate all the time I can spend with them. I knew that this was a blessing from Leah. She really makes me be grateful for every minute I have with the people I love.

Leah's Global Family in PERU 
Members of the 501st in Peru

Yay, we love patches!

501st Peru members treated us to some amazing Peruvian food.

Franco continues to wear his Leah support bracelet in her honor.

She continues to bless us, as while we were in Lima, we also got to finally meet some of our "virtual global family", from the 501st Legion Outpost Peru. During the past few years, they developed and ran a campaign for Leah, and were able to reach out to many people all over the world. We had always had a chance to write to each other while Leah was alive, and now we were finally meeting them in person! It was another blessing that Leah led us to.
We were able to film interviews with them for the documentary we are working on about Mito and Leah's story. The night we had with our new friends in Lima was beautiful and I'm sure we'll never forget it. There were tears but also a lot of love, Leah was there with us too. As soon as we got home we wanted to start cutting the footage that we got. We were re-energized to continue our mission of telling her story and giving a voice to many children with Mito who can't speak for themselves. Since we got back we've been going full steam ahead and taking a few hours a night to start editing what we have, and brainstorming ideas for the documentary.


We are heading to Kansas in a few weeks in March to attend Planet Comic Con and we'll be meeting with a few of Leah's Angels, from the Princess Leah's Angels group of volunteers on Facebook. It's really exciting because we'll also be meeting one of the people who funded our trip to Europe and a large part of how this documentary got started. And we get to meet Mike Stanton who got the orginal  coin drive going. They are also planning a dinner with many other people who supported Leah on her journey and we are really looking forward to finally meeting many of them in person as well. We'll be there only for Sat and Sun, but we are planning on filming as much footage as we can and getting as many interviews as possible.

The Princess Leah Mito Foundation...  a.k.a. ThePLMF

Zev has been working furiously over the past couple weeks that we've been back to get the foundation website started and built. So far it's looking really great and we should be ready to publish it soon, we are aiming for February 17th, which will be her 3rd birthday. He and our friend Anabel have been designing the logo. He's also been trying to organize other events. We have the "I KNOW MITO" campaign that will be slowly making its way into social media. We'll have more on how YOU can join us on our next post.
He is  also working with the Junior Blind of America to hold a tree planting ceremony at their campus, to celebrate! He's taken the reigns and making things happen.
And we do have to celebrate! Her birthday will always be filled with happy memories. Ones of her birth, of her first birthday and her 2nd. Every one of those moments were different stages of her life, and although it was short, it was so meaningful and so full of love. And she continues to bring so much of that love into our lives, with the more people we meet and the more families we encounter who struggle with this.


This weekend has been truly magical. MitoAction, a Boston based non profit organization held the first Mitochondrial Disease Conference, here in LA with expert doctors educating other primary care physicians, nurses and care givers of kids with Mito. Of course, Zev and I jumped at the chance to go, since it was only a couple miles from where we live and we really wanted to learn more and meet people.

On the panel of doctors they had Dr. Haas from Rady Children's in San Diego, Dr. Boles from CHLA, Dr. Korson from Tufts Children's Floating Hospital in Boston, Dr. Enns from Stanford and is leading many mito clinical trials, and Dr. Lowe from CHLA, who is an ER director and sees many children with mito. It was very educational and we were very lucky to have been able to interview Dr. Korson, since he was heading back to Boston. I think it was meant to be that we met him, since he gave such a perfect interview!

We also met Christy Balcells, the executive director of MitoAction and her husband Eduardo. We spoke to nurses and doctors from other states who had come to this conference because they had patients with Mito and not enough people in the medical field really knew a lot about it. They were pediatricians and every kind of specialist and it was great to see that there were so many people in the medical field who wanted to learn. And many parents where there too, also wanting to learn as much as they could so that they could not only provide better care for their kids, also to educate their own doctors as well. We are our kid's best advocate and this is how we advocate for them, by educating ourselves and those around us. We were able to meet Dr. Enns, and Dr. Boles and made plans to interview them in the near future since their weekend was hectic and they are local (or at least a not too long drive away).

Unfortunately, we did not see anyone from UCLA Hospital which seemed to surprise and irritate Zev. We made it a point to send them the info ahead of time. Zev went around asking if their was anyone from UCLA there, and no hands were raised. Sad but true. MITO education should not be limited to one healthcare entity in town. CHLA had almost half the room full of nurses and doctors.


Yesterday was the medical conference and today was the LA Family Mito Social at CHLA, also with MitoAction and the Make a Film Foundation.

They are a non profit that grants children's wishes to make their films, and their most recent film, "The Magic Bracelet", is a story written by

Rina Goldberg, a girl who fought Mito for 15 years, and who lost her battle 3 years ago. It's a short film about another girl with Mito and it's great. It's really to raise awareness of Mito, as well as to share this beautiful message that Rina had for the world: "LOVE LIFE, DREAM BIG AND BE POSITIVE!" This is my new favorite mantra by the way, I really feel like I was meant to meet Rina and her family and see her film.
Again, thanks to my little angel, Leah. Leah introduced us to this community of people who are all going though this in different ways, but still going though it.
We also had a chance to sit down and speak with Mito Action about joining forces, so we are VERY excited about that. I think all of us have to work together.

We met so many new families and kids with mito today, and it was such a great environment. It was so supportive and caring. I also have to geek out a bit and say I got to meet James Van Der Beek and took pictures with him, but also had to blurt out (because I LOVED Dawson's Creek) "It is SO great to meet you and amazing that you're here!" Thank God I stopped myself before saying "I loved Dawson's Creek, but I was in love with Pacey". Anyway, I sort of got over him as soon as I saw all the kids. I met so many new mito kids today and I already love them all. And their families. But the one I really connected with today was Taryn.
She was 12 and in a wheelchair, but she had a huge smile on her face. It was contagious, of course. I introduced myself to her mom and she let me know that Taryn wasn't verbal and she was also deaf, but she was very visual. It's funny because all this time with Leah, I never realized until today that she also taught us something else, another language in fact. She taught us to communicate with kids who aren't verbal, not just with our eyes, but with our touch as well. Taryn didn't have a trach or require quite as many of the tubes that Leah had today, but she reminded me a lot of Leah, especially when she was still moving a lot, before the seizure. They're these sort of spastic movements, and really uncoordinated, but we were used to that with Leah, and it really didn't bother us, it actually felt very natural. I felt like even though I couldn't "talk" to Taryn, we could still understand each other. I was making silly faces and trying to make her laugh, which I did, and her laugh was so amazing to hear. Zev was taking pics of us and her smile was so infectious that Zev's face lit up as well. I miss that about Leah, it was so hard for her to make those sounds with the trach, but we still have some videos of her before then. We would play with her and then go back to talking to people and she was so funny because she kept reaching her hands at my face, like trying to get my attention so we would keep playing. It was really cute. I grabbed her hands and started dancing with her, she was cracking up, it was so good for us. We needed this, this amazingly great experience! Making these kids laugh is food for my soul. And we I can't do it for Leah anymore, at least we can do it for them.

Zev was then being interviewed! He gave an eloquent interview for the cameras where he spoke about Leah and her struggles with MITO and how she (like the other MITO kids) changed our life for the better, and our new Princesss Leah Mito Foundation and how all the MITO foundations are going to be working together. He doesn't like being in pictures or being on camera period so for him it was a struggle in some ways to get rid of that, in order to get the word out. I can't even get him to be interviewed for OUR documentary! LOL.  He prefers being out of the limelight and behind the camera. 

As Always PEACE and LOVE
in Leah's memory,
Frani, Zev ...and Roxy too!

p.s. Be on the Lookout for
The Princess Leah
Mito Foundation  tm
(coming Feb 17 2014)


FEB 16th/17th
Leah's birthday memorial that was scheduled on Feb 17th may be moved to Feb 16th on Sunday. We'll keep you posted with any changes.  This event would start at the tree planting event at the Junior Blind of America campus. After that, we would head over to Leah's grave site for a few words.  It seems her grave marker will not be made in time for this, but we're going ahead with the rest of our celebration despite this. We hope to have the marker in place sooner than later. Anyone is welcomed.

More events...
The I KNOW MITO CAMPAIGN is on it's way!  You'll be seeing more of this campaign very soon with participants from ALL OVER THE WORLD!

Coming soon!
International bake sale for MITO!

 Would you like to be a volunteer, volunteer lead, or start a chapter in YOUR area for the 
Princess Leah Mito Foundation?
Please send us your request to:

Thursday, January 30, 2014

I am laying down, curled up into a ball. The lights are off in the bedroom, but there is some light that pierces through the blinds of Leah’s room that somehow bounces off the walls and creates this little halo over a poster of Leah, that my friends Jen and Bruce (love you guys) had made, for her funeral. In the middle of the poster Leah is smiling at her mommy. I stare and I stare at that poster, hoping to feel those moments I had spent with her. How I miss her smiles.  As time went on, smiling became more of a challenge for her, but she somehow found the energy to do it.  It was even like that, a few hours before she died. She managed one last smile. As I normally do, I took a picture of her. I love telling stories with pictures and capturing the moment. I have over 80 gigs of pictures I took of Leah in the 2 and some years she was alive.
Beside the poster, is a little pink penguin I bought for Leah on her first visit to the ICU.  It has these big eyes like Leah had before most of her sight was taken from her. It has these adorable puckered lips just like Leah inherited from me (probably the only thing she got from me…lol). On top of its head is one of a few tiara’s that Leah was given, by one her global family members.  I know it sounds weird, but sometimes I talk to this little penguin.  I talked a lot to Leah. She was my little therapist. There were times that I would panic when the nurses would be late to work. I prayed hard, that nothing would happen to her while I was alone. People had no idea how fragile she was her last few months. I knew I could now handle anything with her, but it was still scary. But, at the same time, I really enjoyed the alone time I had with her. I would cradle her in my arms and we’d just chat. I’d tell her about my hopes and dreams for her, and for us as a family. I would tell her how proud I was of her mommy, who despite all the challenges we faced, she never faltered once.  I know most of her strength came from my wife.
So here I am, on her bed alone asking all these questions…
Why do these things happen? What is the meaning of such suffering? Why my beautiful and innocent daughter? Where is G-d? What did she do to deserve this? And many, many other questions. 
I tire of people telling me things like “She’s in a better place.” Or “G-d needed her.”  Or “You should read this book.  I don’t want to hear any of that. I want hard answers!! 
And then, something clicked.  I got up from her bed and wrote on my tablet…
And a peace came over me.  Once again, I felt her little spirit embrace me.  “Oh Leah, now you are taking care of me!”   “I’ll be okay baby…I’ll be okay, don’t worry about me. It’s hard without you, but you have given me the strength and courage through your own life to keep me going.”  And that night, she saved me.

                               A TIME TO HEAL
It was time; time to make some phone calls to my doctor about finding a therapist, to help us through the grieving process. And so we did. Frani was dealing with things her way, and I was in my own way.  Finally after almost half a year of keeping ourselves busy with work and other projects it was time to face our emotions and the reality of our loss.  Yes, it was good that we were helping other people in the MITO community, but, we had to be a little selfish and deal with this on our own terms.
I decided to post the above because I know there are other families that are dealing with their own loss(es).  And you ARE NOT ALONE… it’s terrible what has happened to us, but our children have made us stronger and I hope that, that strength will carry you through this time of healing.
As I mentioned we had to take some time for our selves.  Unfortunately, we had to take a break from a few people, that although we loved them and they meant well, they were also hurting and wanted shoulder to cry on, in a time when we could not give them that.  It’s hard to get up when you are being pulled down. We had to suggest they find help as well, while we dealt with our loss privately. I hope they understood.
Despite this long break, we think of those of you that stuck through thick and thin a lot, and YOU ALL are part of the inspiration that got us working on the Documentary about Leah and her global support!  Still it’s been so hard looking through all those pictures and videos of our little princess.
I hope your holiday season was a good one. As you can probably imagine, it was a tough one for us, but we are lucky to have such amazing people in our lives that have cradled us along the way. You know who you are.  And of course, all of you that have followed us on social media and unbelievably STILL do.  Thanks to those people that sent us some very lovely Christmas and Chanukah cards too! Your love and cards brought a smile to our faces.  You made more of an effort than some of our own family.

                    …AND FROM THE ASHES
I feel guilty. Why? Because, our lives (from a professional perspective) have blossomed since Leah’s death.
Frani has been promoted (again). She went from being an assistant to finally becoming a producer at her Video game company! I feel blessed that she has such an amazing job AND that all her workmates are such great people! It’s a rarity to have all that in a job. It has obviously helped us out economically and put us in a place where we can breath a little.  I’m also very proud that despite her schedule, she has managed to find the time to help put our foundation together and volunteer.  At the risk of sounding mushy, she is one of the most beautiful people (inside and out) you will meet.  She’s also been helping manage my career as well. She’s earning her 10%! 
I have been very lucky too. Only a few weeks after Leah’s passing, I was already working on the set of a TV show!  I want to share more on this but I can’t until the air shows. HINT: It has to do with one of my favorite films.
I found out that one of my shows has a spin off and I am a Director of Photography on that one. It’s called  “ANGEL FROM HELL: The Bill Perkins Story”. It’s currently in post-production being edited.
On top of that, I’ve done a few voice-overs and I’m writing music for video games and shows. 
And Frani and I have been playing in our band. No name as of yet.
I got Frani a bass guitar and Rocksmith (a video game that actually teaches you how to play guitar)for Chanukah. She LOVES IT! She’s a natural!
Writing music has been really good therapy for both of us. Our friend (and my childhood friend) and Leah’s Godfather, Frankie is our co-writer and drummer. Frankie and I have been in bands playing professionally together  for years.
Leah has inspired many songs.  We hope to release our EP to the masses within the next 6 months or so.  The label will be taking a portion out of the proceeds to go to MITO research!
Still, I would trade it all to be with Leah again.
See Leah, it’s hard, but we’re trying.


Other stuff to report…
Many of you have been asking how you can get involved in helping us out with our Foundation.
We can’t tell you how excited we are to have such enthusiasm! Basically, we are still in the process of becoming a non-profit. We have been told by legal counsel that we can claim tax  free donations that occur within a 16 month time before they actually give us non-profit status. However, we don’t feel comfortable at this point taking any donations for The Princess Leah Foundation yet. So, what we are doing is sending them to Mito.Org and The United Mitochondrial Foundation for now, until we get that taken care of. We figure, it’s the same War we are all fighting anyway.
So this is what we are and plan to be…
We are a grass roots and completely volunteer organization that began as a support group for us (the parents) and expanded to eventually help others that were experiencing the same issues.
We provide education to the masses through the Arts and Entertainment arenas.
We come from all over the globe, walks of life, all economic and religious backgrounds.
We plan on starting a Volunteer registry. This way we can keep in contact with those people that would want to volunteer AND provides us with a data base that people can check on to see if the volunteer is legitimately working with us. We are doing this to avoid having people claim they are part of our organization when they are not, for training and for safety and privacy issues as well.
Although, we cannot be all things to all people we hope to give them tools “Capsules” that families need to EMPOWER themselves throughout the difficult journey of dealing with Mito disease.
We hope to help those that are in need, and if we are not able to, we hope to point them in the right direction.
Some of the tools we want to provide would entail things like teaching parents how to maneuver around the healthcare system efficiently, how to budget themselves through difficult times, finding the help they need for their child, by contacting our connections in the Mito community in hopes of getting better results, how to ask the right questions from doctors, social media do’s and dont’s, sharing your story with the world…to name a few.
 We are currently working on the following projects.
                   We are positioning ourselves for  the 
                                 "I KNOW MITO" 
campaign that will coincide with Leah’s birthday on the 17th of February. This campaign (we hope) will hit worldwide in an effort to eradicate misinformation and educate the masses on Mitochondrial Disease.
The more people know about it, the closer we’ll get to a cure!
We are also trying to get our MITO Camp for kids and their families going too. Although, we want to figure out a few more legal and medical issues that might present themselves out before doing this. We have an amazing benefactor who wants to donate a place for this to happen AND we also have been talking to the Junior Blind Foundation who would like to help us out with our Camp here in Malibu.
Frani and I are working on a few projects ourselves like writing a children’s book about the day in the life of Leah, in an effort to educate.
ROXY ROO!!!!! The Mito defending dog! She’s also The Foundation Mascot! And we are training her to be able to visit kids in the hospital!
We want to visit schools to educate kids and their teachers.
We are doing our “Gowns for Good”. We are making hospital gowns cool!  Now, kids will have some pretty awesome gowns for them to wear at the hospitals. We have Princess designs, Super Heroes, and so on that are cut in the needed areas for Tracheas, feeding pumps, and lines. They are easy to take off or put on too…not to mention, nice and soft instead of those ugly uncomfortable ones they usually provide.
 We have already helped produce several auctions, and gallery events that have provided help and more than a few thousand dollars to several families in the area and Mito organizations with the help of our Leah’s Volunteer/ANGELS Group and businesses that have joined the cause.
Obviously, none of this will be happening all at the same time. We’ll be rolling these things out slowly but surely. We’ll be testing things out with some of our local MITO families to see what works best for them and what doesn’t.
In the next few weeks and months we’ll be posting more about our events and how you can join our PLF Volunteer/Angel program.  We already have many people positioned to help out in other states and countries. These “Volunteer Leaders” will help guide you through these events. At the moment we have Volunteers positioned in Kansas, Florida, Texas, California, North Carolina, Georgia, and we’re hoping to have it spread to other states. Internationally, we have volunteers in Spain, England, Brazil, the Netherlands, Germany, Peru and more. 
We are also being invited by Conventions to speak about Leah, and Mito. We're excited to chat about this.
But the truth is you really don’t need us to get involved. Look around your neighborhood, you might find a child and/or family in need. Sometimes, it’s more about a hug and a smile than anything else.
Please continue to check up on this blog for more updates.
Our Foundation page should be up in time for Leah’s birthday! At that time we’ll be moving all event notices on that site and keeping this site as just a blog.
We thank you for all the love and support you have given us and welcome you to our PLF family as well!
In Leah’s Memory,   
Zev, Frani & Roxy!
        Upcoming Events Schedule:
   FEB 17th 2014

*Marker unveiling at Leah’s grave sight
(Tentatively set due to manufacturer of marker.) 
Either way, we'll be there honoring Leah on her Birthday.
@ Hillside Memorial Park, Los Angeles, CA

*Planting of Giant Sequoia tree in Leah’s honor
@ Junior Blind of America

*There is also a Run/Marathon happening on that same day (not PLF sponsored) for MITO! We’ll have more info on that later. @ Los Angeles, CA

*Frani and I will be attending a MITO conference and will be doing more interviews with Mito researchers from around the world. 
@Los Angeles, CA
* The Princess Leah Foundation website goes live! And we go live with our Twitter (for live updates) and other social media sites!

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