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.
KANSAS HERE WE COME!
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.
A MITO WEEKEND
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.
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.
MEETING OTHER MITO FAMILIES
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
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.
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)
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.
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!
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: