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.

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.

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.

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

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
at 
www.theplmf.org
or 
www.iknowmito.org
(coming Feb 17 2014)

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                                                                     EVENTS
NOTE:  

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:
info@theplmf.org




1 comment:

  1. Love U Guys. Still on LinkedIn and Twitter, whenever U need me. Got kicked off FB, same as Zev. xoxox

    ReplyDelete