I'm back, after several months away from this blog. I've been meaning to make time to do this consistently, but life always finds a way to get in the way. All I can say is I'm working on it! :/
However, the experience I had last night was what's made me revisit this blog and continue writing. We had a chance to meet the Zakar family (Erika, Todd, Victoria, Dean and Tru), who we became friends with online through Leah's journey. We took this opportunity to record their interview that we hope to show in the documentary we're making about Leah. It was a night full of emotions, tears, laughs and lots of hugs, but it also reminded us of why it's so important to continue working on this project. Hearing Erika describe how Leah's story impacted her and seeing how emotionally invested she was in Leah's care was an amazing experience. She said it made her appreciate life more, and brought back her faith in humanity, among many other things that I'll save for the documentary. I don't think we ever could have anticipated the affect we, as a family, would have on other people outside our immediate circle, but as we continue to interview more and more people, it just becomes so much more apparent. It was a joy to finally meet them in person after knowing them for so long through Facebook, and we especially loved meeting Tru, their 5 year old daughter.
Tru was shy at first but once she met our dog Roxy, she opened up and couldn't stop laughing for about 10 minutes. Tru has cerebral palsy, so she's not able to stand on her own, she uses a cute little green wheelchair and when she's not sitting in that, she sits upright on the floor. For someone who can't walk though, she is fast on her bum! She can scoot herself in any direction using her hands and feet, and especially on our hardwood floors, she was sliding around like crazy!
We were so happy to be able to have kids in our home again, even for just one night. Her nephew Dean, who's 3, was also a lot of fun to play with. After playing fetch with Roxy for a while, we also did a lot of other fun things.
- Imaginary tea party
- Imaginary bake-off (I won 3 blue ribbons!)
- Imaginary wizards and magic fairies
- I drew an awesome picture that Dean and Tru described (don't want to spoil it, but it involved a dragon-snake, Roxy, Leonardo the ninja turtle, Mario and Luigi and Tru and Dean...I'll post it up when she's done coloring it in, since it was all in black pen)
- We played in a band together, Tru and Dean on drums, I was on guitar and later on we all played on Zev's keyboard.
- and others...
As I mentioned already, having some noise in our place again felt good. We got so used to having a busy home, with nurses going in and out and alarms going off at every hour; recently we've become so much more aware of how silent our home is now. It's like you spend all this time getting used to it, then suddenly, from one day to the next, it's all gone. That's been an especially difficult transition for us. Needing to juggle what feels like a million things at once, and just knowing that every decision you make is done to improve our daughter's well being, and then not having any of that anymore. I can't describe it as any else but gut-wrenching. Feeling like you have no purpose or meaning now that she's gone, it's something that sneaks up on us, and terrifies us.
But nights like last night remind us that we still do have a purpose, we still have a role to play in all of this. There are many people out there who connected with Leah's story, for one reason or another, and we are all that's left of her, so the best we can do is continue her fight. As difficult as it may be for us to sit and write on this blog, we recognize that there may be people out there who are just learning about Mito, or who are dealing with navigating the medical maze, or who are taking care of a disabled child or even have lost a child. I don't think we pretend to know how to do any of this, we just take everything one day at a time, but if sharing our experiences can make any kind of positive difference in someone's life, then we want to continue doing so. And part of Leah's story is also what happens after she's gone, so we now have a new purpose: to tell her story through this documentary, to get the non-profit up and running, and to continue writing in this blog. These are enormous tasks for us, and we can't promise they'll be able to happen as fast as we'd want them to, but we are committed to them and to this community that has gathered around us. We've received so much love and kindness from people all over the world, and now we want to do our part to give back.
Here are some pics from last night:
I know this was a short one, but I hope to be writing again soon.
PS: In our next blog we'll be talking about a recent award we received from the community and share an podcast interview we participated in last week.
Wednesday, May 28, 2014
It’s coming closer. The last day I saw my daughter; the last time I felt her heart beating against mine, before it slowed to a stop. Almost a year ago. A year. A year of feeling lost and confused about the direction of my life. I don’t think people who don’t have children can really understand what I’m talking about.
When you become a parent, it’s a life-altering event. One that makes you realize that this tiny little person is a part of you forever. It’s a piece of you, that you made, a life. A beautiful, curious, joyous life that just wants to be loved by her parents. Your life now revolves around your kid’s life, it becomes your family life. You change your work schedule to spend more time with them. Your weekends are spent more with your new baby than with your friends, and so on. It becomes a part of your new normal. You start to get the hang of it, and even though you go through bumps in the road, you learn to be a mom or a dad, through experience. You expect to have to worry about what they’re eating or if they’re doing well in school.
People never really think what happens if your child dies. When Leah was alive, I sure as hell never tried to think about it. But, it’s so strange, to go from having so much responsibility; so much information to remember about what meds she was taking, how much, at what times, whether she was getting a cold or a bacterial infection, etc. Now, there’s none of that. Our home is so quiet now. It feels like I got demoted. “I’m sorry this position is no longer needed”. I still come home and just feel so lost. I had a routine with Leah. We would give her feeding, her meds, lay with her in her bed, give her a breathing treatment, sing “Dream a little dream” in her ear and caress her soft, beautiful face and hair, until she fell asleep. And even then sometimes, I would still just snuggle with her for hours until I went to bed.
I feel like people around me sometimes are just waiting for me to get over it. They can’t possibly understand that feeling this way isn’t just something you can just get over. She was a part of me, a life that I made and grew inside my body. I felt her before she was born, and when she died it felt as though a huge chunk of me died also. I keep trying get that feeling back. Feeling whole. Even though she was different and had all those medical problems, it never took away the fact that she made me feel complete, happy and loved.
I did yoga outdoors today and it helped me get closer to that feeling. Feeling like a part of everything around me, like one with the universe. Leah was the reason I started meditation. I meditated through the 24 hours of labor, free of drugs and able to let go of the pain. I feel like when I meditate or do yoga, I can let go of some of the pain of losing her. And I feel her instead, and it makes me smile. I remember the little light fluttering around us at her funeral and I know she was there. I know she’s always with me.
I just miss the life we had with her.
Wednesday, April 23, 2014
I have been so hesitant to write on the blog. Frani is better at it than me. I’m not sure what to say at times, since most of you that read this blog today, have surprised us with your continued support.
In a way, I feel obligated to you for doing so…for being there for us despite the fact that most of you that do read this, don’t really know us other than from this blog. I feel bad. Bad, because I can’t be there for you in some ways. But, I guess in other ways I am there, or rather here, keeping up a fight that is NOT over with. I'm paying it forward. You may call it an obsession. For me it’s a way to keep Leah’s memory and my promise to her that I made while she was in her last hours. I promised never to give up until we find a cure. I promised to show her fight through my own art endeavors (filmmaking, music, writing, etc)…because, that’s all I know and do.
|Princess Leah in one of her happy moments!|
It’s not about feeling sorry for yourself, or climbing up the tallest mountain and screaming about it. It’s not about blaming others. Or staying angry at those that were not really there when you needed them. I’ve gotten past most of that. It’s about staying on target. And truthfully, it’s about staying alive through all the immense depression that follows. It does feel unbelievable to us…STILL.
Almost a year later, and it feels like she was here yesterday and then gone. There are times when I truly tire from people telling me that it gets better or even to go as far as saying “You should have another baby soon!”---WHAT?!?! I keep it in, but those are words that make me want to string them up a tree and hang them.
At the same time, we’re learning to mask our sadness and push our smiles. We have to. Frani is better at that than I am. Why bring people down? It’s not their fault. Still, we have to deal with people not really understanding what our life has become after Leah’s passing. It’s not something you turn off and on, it’s not something that has a timeline or “phase”…it’s pain in it’s purest form.
So, is it something we will be “cured” from? No. It’s something that you learn to maneuver around, something you can even harness when you are down, to lift you up…YOU have survived this situation. I have. Frani has too. To borrow from a Christian friend of mine “My friend, you have been doing some serious spiritual benchpressing that goes beyond what most of us have ever gone through., God has an extreme purpose for you. “
But, for all that I have written about Faith, mine is not where it should be. I have faith in what I am trying to do, faith in my wife, in many actually, but whatever “test” I am part of, I don’t think I’m passing it with flying colors.
I usually celebrate Passover and this year I could barely even recite the prayers. I don’t feel like I’m being heard. Now, before I get a lot of you that are religious sending me advice….be patient, and keep it to yourself. This is a journey that no one can travel with me, but me.
So how are we dealing with her loss? How do we manage? We have a strong core of friends that have been “babying” us along the way, during our healing process. Frani and I go to see a therapist, and a psychiatrist, and then we started to go to group counseling.
|Taking a break from all the excitement.|
What I saw were faces….full of sadness. Sure, a few smiles, but I could tell, they were doing the same thing we do…pretend to be happy.
We were given name tags and some brochures/pamphlets. I found my chair and Frani sat next to me…close enough to hold my hand. And then the stories of the children and how they passed began. I can’t tell you exactly what was going on in my head since I still can’t quite figure it out. But it wasn’t good.
Their stories were touching and very sad. One parent had a tree randomly fall on the car that his son and future daughter–in- aw were in. Just like that, they were gone. Another, had a son that went to help an indigenous tribe in south America maneuver around an oil company trying to buy their land…he was assassinated. Or the mother that saw a car hit her son and then run away, only to be let free by the courts. She buried her son and now she has to deal with the rest of the children that saw this happen as well. By the time they got to me, I could not even make a sound, and Frani jumped in to tell our story. (Thank you Frani)
In some ways, I felt lucky. Lucky, that I had time with Leah. ALL my time was with Leah.
One by one, they went around sharing and crying about their kids. It only took a few for my own tears to start to roll down my face…and then I began to shake…I tried to control it, since I didn’t want anyone to feel uncomfortable. I got up and went outside and cried on the footsteps of the temple. And then I let out like I never had.
The truth is most of those that have family may never really “get” what you have gone through. And some can’t be blamed. There lives are somewhere else, and in some ways that is good…for them at least. But you also feel sorry for them. Sorry that they never really got to experience Leah the way some of us did. We didn’t see Leah as a sick baby. She was so radiant and despite her illness she had something almost magical about her. She fought a good fight for the little tyke she was.
|Here's Leah trying on her new glasses and acting silly!|
I went back in as Frani was finishing Leah’s story, the whole room was in tears. They connected with us. I on the other hand, was in my own world, with questions floating around in my head, and stabbing me in the heart and soul. Is the Universe so random?
There is this joke that goes “ I can’t be an Athiest, because then, who am I going to blame and bitch to when things go wrong?”
Now before I get a plethora of religious people writing me (and I love you guys too), this is where I am at, at THIS particular juncture in time. It doesn’t mean I believe this or that…I’m just upset.
And it’s not about anyone feeling sorry for us or these kids, it’s about stepping up and NOT feeling this way, by making a difference in the lives of children just like LEAH. To refresh some of you, about 2 years ago, we were being told that MITO affected 1 in 4000 children. Before then, it was one of those “very rare and extremely hard to find” diseases! And now, we’re finding out through better diagnostics that it’s coming down to 1 in 1000! This has me worried. Very worried.
It worries me from many perspectives and aside from the obvious, we have to ALL join in to find this cure. Why? Because we are finding new connections to other diseases. It’s not just isolated to this disease we place over a few conditions…it’s scary and we’re going to see a lot more of this disease. More of you will be affected. Mito can affect you in a lighter form or in the awful way it did Leah.
Don’t get me wrong, it sounds like I’m writing about the end of the world here, but I’m not. What I am saying is, the sooner we get more people to learn about MITO we will see more results on how to combat this illness. For example, we are in need of Metabolic doctors, and Mito specialists and those doctors that will also offer support to this focus. Every time I’d get a new doctor in Leah’s room or a doctor that was fresh out of med school, I’d give him Leah’s story in hopes of inspiring them to get involved. And you know what? It’s worked. Frani and I have heard from a few students that NOW want to go into MITO research and become specialists in MITO!
I would love for all of you out there to join us in finding these potential doctors/students. Learn Leah’s story. Tell them about those that have had it and those that continue to fight for their kids. YOU really can make a difference. I might sound desperate but the statistics are there. Help me educate the masses…so that all of those children, teens and adults, will not have lived their lives in vain. Have it count.
And for those that are trying to help, I thank you. Let us dust off the dirt from this fight, and stand up and be counted.
Your rewards will be felt through your hearts.
Iknowmito.org ß-This will be our new web address.
More on the new name, and what we are going to be doing on our next blog post.
Also, we're going to share a few things from our travels including our recent trip to KANSAS CITY!
Also, we're going to share a few things from our travels including our recent trip to KANSAS CITY!
Monday, February 10, 2014
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:
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…
“MAYBE LIFE ISN'T JUST ABOUT HOW YOU LIVE. BUT, HOW YOU LIVE, WHO YOU TOUCH, AND WHAT YOU LEAVE BEHIND ON THIS WORLD; FOR FUTURE GENERATIONS, THAT MAKE LIVING WORTH IT.”
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.
THE PRINCESS LEAH FOUNDATION
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!
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!