Hi, I can't hear anything on your end, I see your lips. New Window, Okay,
hello, I can't hear you. Megan, at all. What's going can you hear me? Zakira, can
you? Megan,
yeah, not hear you really well too. But Megan, great. We don't hear you. Audio issues. Oh, there, there, there you are. You just do. I turned
up the volume, but it was already at 75 I turned it to 79
well, is something blocking it or something the speaker?
No, I'm so sorry, technical difficulties, but so nice to see you. Zakira, nice
to see you. Too excited.
I don't think you've met Helene yet.
No, not that.
Do you want to give her? Give her a little bit of background on you, a little bit of an overview, because I've known you for a long time, and zakiir and I got a chance to reconnect in Hawaii, but this is her first chance to meet you, Helene, and I'd love to share more about her story and how we first met. Okay,
yes, and I'm trying to remember if the power of Facebook, all I can say the power of Facebook, because I'm like, which Facebook group was it, but probably also the we see hope Facebook group, or one of the retina black donor Facebook group first, and then connection through there. I believe that the initial, initial how I found out about noble glow. But before my mom office day, she's the one who was the researcher. So, yeah. Okay. The
life journey.
Where do I begin? You're
an amazing individual, and I'm we did a feature article on her a couple of years ago, like several years ago, way back before COVID, but I was excited to catch up with her and and looking forward to hearing where she's at now, but I'll let Can you give her a little bit of an overview on on when you were diagnosed and your whole pathway, and give her the synopsis on all things zakira? Yes,
so I would diagnose with bilateral Retinoblastoma at six months old. My six month checkup, my mom went for my checkup, and pediatrician told her not to worry about it, but she got it, went for a second opinion, who then said, Okay, she had bilateral retinopathy, and we need to have the unique creation immediately. So my right eye, it was indicated at nine months old. Since then, I've won the right and thankfully, in 2020 living in my left eye. But I do have a glaucoma now, so I have the medicated eye job to keep the eye pressure down. So all of this was at Baskin Palmer in Florida. And yeah, we've been much kept going back and forth to Baskin Palmer, even when we moved to a different state, it was always okay. We're going on a boat trip. We're going back to Baxter Palmer. So it was always that, even when our doctor, Dr Timothy Eugene Murray, went into private practice, and so pretty much my both my parents, you know, made sure that it didn't stop me from living life. So I participated in sports. We run our road trips. I started going internationally when I was 13, my third international trip to Costa, Riva when I was 13, and I did lose my hearing slightly.
Most of it that I use online into captions. That's why I enable the captions, and then I also look green. So I lost my hearing a little bit, and my first international trip was to Costa Rica with people who are hard of hearing or wanted to learn what it's like to interact with that's just from zero to 13.
So that was the Costa Rica trip was for the hearing impaired. It wasn't an RB trip,
correct? Yep. Hearing a bit, not an RV trip.
That's amazing. Okay, so, and what was the name of your doctor? Again, from Bassam Palmer, I know you mentioned him. I couldn't quite catch his name. Timothy G Murray. Timothy Jean, Murray, do you want it in the chat? Helene? Helene is taking some notes, because we'll put together an update. Did
you say? Murray? Jimetti,
Timothy, oh,
Murray, what's funny is, on South Florida,
and and I, you know, I've been helping Megan over the past few years. And, you know, I always thought, well, maybe I'm just biased because I'm from here, but Baskin Palmer Eye Institute is truly amazing, but I never really hear it. You know, there's so many other centers that get big spotlight. And I don't know if they kind of just keep their nose to the ground and do their work. I don't know, but I always understood Baskin Palmer to be like the quintessential for eye care, at least that's what they told us being down in South Florida. But when I'm with you, Megan, I rarely ever hear anybody talk about Baskin Palmer, and I don't understand that, because it is really one of the best in eye care. And I just I wonder why you don't hear people talk about it. Maybe, maybe they're doctors like your doctor, and maybe ones now they just don't seek Limelight at times.
Mentioned in Florida. I think it is the retinal bustoma.
I never hear you talk about ever I've that. This is the first time I've heard somebody bring up Baskin Palmer Institute.
So is Doctor Marty. He retired
from there. He's no he, I guess, retired from Baskin Palmer because he's now in his private practice now, but it's still around the corner from the University of Miami. Yeah,
and it's Timothy Murray,
yeah. Timothy G Mary, yeah, because
he's got Murray ocular oncology and retina center, Yeah, amazing. That's fantastic. Okay, I gotta make a note that he's your we have a list of doctors in Florida, and she was just mentioning that I'm like, I don't see him on the Bascom Palmer, but I do see him with a separate the only other hospital we
School of Medicine, but we never that's
associated with Baskin Palmer. That's if you're at University of Miami medical school, you're doing everything with Baskin Palmer. They're one in the same.
So okay, well, what was it initially that alerted your mom to the fact that you even had an issue with your eye. Did you have glow photos? I can't remember.
I did. Yeah, just showed us to somebody today, so I don't have it right next to me, but, yeah, it was a glow photo. Um, I to describe the photo until I can find it again. I would. I had this white hat on. And I think my mom had Shaw before, because sunny South Florida, she saw the sun hit my people, and at first she's like, what was that? And then she was able to have her camera this time around and caught a fiction we got my attention
with the film camera. Then you had to wait to develop the picture. And then she saw it, and held on to that picture, and brought that picture. First the co worker, she's like, Have you ever seen this before? And then she brought it to her doctor, my doctor, my pediatrician as well.
And and when you do you have siblings? Do you have any brothers and sisters?
I do have half older siblings.
But did they do the genetic testing on you with bilateral to see if it was any there was a genetic component or no.
They did genetic testing. And so it was not genetic from either one of my parents, but they did say I have identified myself yet, but they did say that I have that 5050, chance of passing it on.
And so there was no family i
The example of it, okay? So you lose your one eye right then, when you're still just an infant, and then you grow up, you start speaking publicly and representing yourself, and then, were you always a writer? Or was that something that you kind of aspired to do, or what tell us a little bit about how that all came to be?
Yeah, I think my mode of, what do you call? It, releasing my stress, started with writing. Great. I think my mom introduced me. Well, rewind. My mom introduced me to a camera. First. I was five when she introduced me to a photo polar wood camera. So all she did was show me how to press the shutter, and I was capturing good pictures all of our voters, of the people that, I mean, fans that were nearby. But were nearby, a picture taker effect. But then when I think middle school, middle school, fourth grade, fifth grade, in between having the speech therapy, the speech therapy is recommended that I started writing in the journal. So by this time, it was journal writing first. I had read, you know, the dahlia Ben Frank and books like that, and was inspired to write as if I'm talking to someone who may read it later on. So it was a camera first, and then writing. And then it was high school. I had the guidance counselor and, you know, extracurricular activities with those teachers who mentored me into speaking confidently. So all of that would be loaded in middle school and high school.
So when you were journaling, did you take some of your journal entries and then compile them into your book? Or how did the book
my mom journal entries that are in the book journal slash blog entry. So what she did when I showed her how to use the blog she was typing some of her journal entries. So the book itself is both my mom and I together. So some of it is my blog, and she turned into the book,
do you publish? What was the name of the book?
Seeing like three different lens I have that link to me glow. It's seeing life through a different lens.
Oh, that's a beautiful title. And then so you published that. When? When was it?
December 2019 Yeah, so New Year The 2019
so that was before COVID And the world's going crazy, right before COVID, before Helene too,
tour with it. Or did you
I made it? Yeah, I made it to one physical stuff and everything out with more virtual so that's when I think that's also when I first reached out to you too, because I ended up doing just kind of virtual stuff, you know, article features, podcast features, being developed
and so. And then what? What has happened since then? So that's when we were last catching up. And then are you writing a second book, or are you speaking still publicly, or getting more involved with we see hope, or give us an update on what followed the book?
Yeah, well, I think the biggest thing that followed the book was a TEDx talk that just happened this past March. So what I ended up doing through the pandemic because we were more virtual than in person. I did have a few virtual speaking engagement, but a lot of it was more motivational, inspirational. That was always the only either we got to know black, thermal cancer,
all of that was being built up until I was able to do my TEDx talk, which I was able to name it, seeing life from a different lens. And so although that happened just the past month, it was really from March 2020, to march 2024, of just continuing to tell my story, especially to those who have never heard of retinobla. Never knew what to look for in the glow and things of diaspora. So that's the biggest thing that happened since then. But what's in the works since then is with me being in Kenya, I'm also continuing to raise awareness and seeing how they include or exclude accessibility here in the continent of kindness. So it's it's going to turn into a documentary series. It's still in ideation, because the more people that I talk to, whether they're the doctors of the of the childhood cancers, or they all retinal, black thermal survivors, different children.
A series that people will watch. So, yeah,
and so, okay, you'll have to send us the link to the TED talk so that we can share that as well. And I love that you followed it, you know, seeing life through a different lens now to kind of carry that forward. And then, when did you move to Kenya?
So especially October 30, I think when we took the non stop flight from New York to Nairobi, October 30 last year. Yeah. No, this like this past two months ago, less than two months ago. Yeah,
so amazing. So it's all, it's all brand and new to you to be there, yes, and is the whole family or who all went,
yep, me and Mama. Oh, that's so sweet.
And did your was there a work? What was it that kind of led to the the change
here is it just always a dream that you wanted to be back from Kenya
well, and I've always, I think maybe we want a little bit so My first introduction to the continent with Ghana in 2011 that was immediately after high school. So in a way, I took a gap year and volunteered for two months over the summer. And so for me, that was I wrote about that experience because that was my first time being in a climate so hot that my prosthetic eye dries up so quickly. My hearing aid battery dies super quickly. So that was my first experience, but it didn't send me away from traveling or even traveling to the continent. So I went to two more African countries, three more African country between that time, which were 2011 and 2016 and so Can it just happen to always be on my list?
I kind of find a assignment on Google, and I came across one of the beaches in Kenya, and I declared, I want to go there. And so it just the timeline. Just so happened to work out that when my dad passed away this April, 2024 my mom is just like, I'm going wherever you want to go. So the silver lining is that we now have the flexibility to be here, you know, as long as we're called to be here, so
and so, what are you working on there? Are you involved or engaged in I know you said you're people within the hospitals or you're but are you working and doing something on the side? Or what? Give us an update on life? And yeah,
I know it's Yeah. So it's a little bit of both. I think in order for me to kind of get settled into the climate, the environment, the culture, a volunteer opportunity opened up where I am a volunteer. Do
a media teacher and media ambassador for a rescue center that is here on the anti beach. And although the they the rescue center had both a good and a boys rescue center for the ages, you know, five to 18. It also has an academy, currently elementary school, but they're working on building their own secondary or high school. And they also do have a hospital here. Now, when I've done the tour and I've asked them, Okay, what do you do about ophthalmology? They say they refer to the bigger hospital, but they're open to learning you know about the tools that are necessary, or training that's necessary. So while I'm here, even though my my foot in what teaching, you know, photography and empowering Megan choosing to confident and tell their story, because they've been through a different shared trauma, in a way, my mom and I are still looking for continuing vision awareness, eye cancers,
glow related disease too. It's it's amazing how many different vision conditions also are related to Luca Coria, that crazy glow. I'm so glad your mother took it seriously and was able to find diagnosis and time. And so, you know, it's funny that you're actually in Kenya, not funny, but ironic, and that we are hoping to do a lot more work in Kenya in the coming year, and to work with there's a doctor did have you ever met Doctor kaliki? Kahake. Kaliki, have you heard of her name?
What's the first name? Kahake,
K, a, H, A, K, I, no. Kahake, okay, so at some point it would be great to have kahaki meet. Zaakirah and Ruth and reconnect with grace. So we were in Kenya, back about a year ago with the ISO conference. You know that International Society of ocular oncology, we're asked to speak, so I flew to Mombasa. I flew to Mombasa, excuse me, and I spoke at the conference in Kenya, and it was hosted by Kenyatta hospital, Children's Hospital. And Dr kaliki is the primary doctor that's working with the retinoblastoma families in Kenya, and so she was kind of the hostess of the whole event. And through that, we came to meet two women, grace and Rhoda, who later became ambassadors for know, the glow from Kenya. And now we have a friend of Grace's who's going to be our program manager in Africa, and she's
from Kenya,
connections that we already have in the area, as I'm sure, have you been working with Marissa to help to get to know some of the other contacts she has in the region. So
actually, Melissa told me to talk to grace. Grace in Rebecca, yeah, so she I've been in touch with grace, and she's been referring me, and even added me to a WhatsApp group of some of the other parents that are in the area, or did on the on in the country with children
um, which is fantastic. So Grace is one of our ambassadors, and now she's living in the States, as you know, but her family is in Kenya, and Ruth is a close friend of hers who has
helped you. To
help cover the whole region, because Helene and I, as we're moving forward with new awareness campaigns for know the glow, there's still so much work to be done in those countries. So I'm so happy that you're there, because really, as you said, being able to help pull some of these stories together and help to, you know, gather their journeys and find creative ways to share the messaging, which you've done so beautifully, to help bring more attention and awareness to retinal blastoma. So we'd be very excited to continue to stay in touch with you on how things are progressing and on that end for you and to help you know within the introductions that we can to help you are, are you hoping to be able to continue speaking there? Or are you, you know again? Yeah, your dream world. What would your dream life? Yeah, definitely, yeah.
The dream life is
country in the continent, traveling and speaking and I mean my dream had photography. Had always called my name, even when I ran away from it. So my dream is also to have an accessible photography studio, you know, for the children to learn and grow. But are the bigger part of yes still advocating for accessibility and inclusivity, despite speaking and traveling.
Well, I think after I attended that conference in Kenya, zakira and I learned that 50% of the retinoblastoma deaths that occur globally occur in Africa, that's when Helene was like, Okay, we've got to always have some sort of campaign running in either Anglophone or Francophone Africa. Do you speak any of other languages do you Speak?
I'm learning slowly but surely. That's
wonderful.
And now we talk to so many people, but you would really love zakira. Aaron Haggerty, have you ever heard of mama? Response, okay, so Erin, I just don't remember what country she's in, or maybe she's in multiple countries. Do you remember Megan? But so her whole thing is she listens to the mothers and the communities, but it's all about making sure classrooms and everything have accessibility components. Like that's her big thing is making classrooms and everything, you know, even like trying to get to the doctors, making everything so it's accessible the way things were set up, they couldn't be utilized with people with special needs. I mean, it just, it was, like ridiculous. You would just, I think zakiir, you would love to meet Aaron. You
You know, Erin reminded us a lot of what we did with, know, the glow, and what you're doing now too. It's like, okay, you see a need. You see a unique ability that you have to help make it better, and you just jump in and start doing it. And that's what she did. I mean, she kind of saw this need. She was working there, she was young, she was just over there, like on a trip abroad, and then she saw this massive you know issue, and she joked, I forget how she joked about how pushy she is, or whatever, to kind of get things done, or she just kind of keeps, like knocking on doors until she gets answers. But
I'm gonna put her website in the chat so you can see about it. I just pulled it up. Yeah, I think you'll be very you'll you'll really love I mean, it speaks to what you're you advocate. And I just think you would be very impressed with her. It's just what she's been able to do. And
finding more ways to not only share your story, but share the, know, the Grow messaging, or some of the images and materials we've created for Kenya. You know, maybe you're coming to, I
think she is in Kenya. It is Kenya, yet you we have to connect you.
But you know, just, I don't know if you will send you the link to the Kenya materials that we've created, but if there's any way to fold them into your talks or and as you're going to speak at a school and making posters for the school, or any ways that we can help not only highlight your journey and the experience and the importance of watching for the glow, but you know, sharing them the message through some of our images as well that We've created for the country. Remember Helene for Kenya?
Do we have Yeah.
Kenyatta, Ministry of Health and the sorry, and the, what is it, the Catholic Church there? Or I forget who the other logo is.
I don't know. There was a lot of logos on that one. It had a lot of support, yeah, because of Dr kaliki.
Yeah, we have materials in Swahili, and I'll just share to show you right here. Zakiirah, but this would be good for you to have. But I mean, first of all, we'd love to do an update just on you. And it was so fun getting to see I love we got our picture together. I posted that, I think for but you can see here we have different images that talk about in particular, kahaki, kaliki, unlike most countries where we're like, don't just say it scare everyone. Cockies Like, say it can be cancer. I want to scare everyone. She's like, I don't want any more late stage cases coming in when extra ocular is the scenario, and I have no options to treat these children. You know, 50% of the cases coming in their door are going straight to palliative care. So the opportunity to build awareness is, if any of our materials can be helpful, you have ideas. Share with us. Let us know. We would be delighted to have you help us find new channels to not only build awareness, but to highlight your experience, because you are, you know, the perfect example of not only a retinal blastoma survivor, but as a woman in particular, and being able to be so strong, so capable, so confident and confident, and now not only writing your own book and not only moving to the country, but to explore ways You can be additive, not only in the RB world, but in the world of photography, in the world of helping to give young girls the confidence to be writers or to rise above whatever their physical challenges or stumbling blocks may be, to recognize that there's a whole world out there waiting to receive them, and that the world will carry you through if you allow it to. And so we'd be just super excited to continue to explore ways to work together and have you by our side, and to know for you that we are right by your side as you continue to explore those, those roads. I thought to meet your mom one day too. She, she must be an amazing
I know she's she's been like the whispering ear because she's here. I mean, she doesn't move as fast as she used to, but she's here, and every information she finds, she's standing at me. And so, speaking of
the whispers in my ear had been, you know, she, she had noted that, you know, the space of the hospital at the rescue center is here in in grace, and all of her neighborhoods here. So she like, how can they come together? They come to this hospital, get free, I exam and learn about, you know, the glow. And so I'm like, That's a good idea. So I've been talking to grace. We're just trying to find a date that works before everybody has to go back to school or find other resources that works. And not everybody has the easy access to transportation. So in my ear had been something like a family support group, maybe find a way to integrate child life, but most importantly, they get the eye exam, right?
I mean, I love child life, and I love the other elements of what we can do to support these families. Like even if you find families that want to share their story. You know, we've, we've sent like Grace has about
so nice, yeah,
you know when we share family stories from Kenya that if the child's lost, and I will send them one, Rhoda, I think is the one that has the octopi, but anyway, but I love those additive things on the back end. But really the most important thing is we've gotta find these kids so finding avenues to share about early detection and the importance of childhood vision care and spotting that glow like your mom did. What's your mom's first name,
Aida.
Maybe you could put it in the chat for us. Aida
like the opera. Is it? Aida like the opera?
I don't know opera. A, I
D, A, H A, I
D, A, okay.
Aida,
K, H, A, I Okay.
Oh, well, oh my God, what did I just do? Where did my notes just go? Oh my God. Where did my notes just go? I just pushed something, and I don't know where my notes went.
Without is that we undo? No, no, it's
like, literally, the whole thing went away. I'll just go there it is, okay,
good,
oh my gosh. Anyways, we've got it recorded. But the but what is? What does zakiir mean?
The so that came mean the afterlife, and then my middle name, na. Ya mean bright light, bright light. No way she named me before she even knew about the diagnosis. I can't
remember. Even believe so amazing. Wow, holy, you are a little gift from God, aren't you? That's just amazing. It
is. Yeah, I'm the youngest. I'm the miracle child, because both my mom my dad thought that my older siblings were it, and so my mom was a her 39th birthday. She No, I, I am her 39th birthday present because her birthday the 14th of December, and mine the 20th of December, so literally, the early birthday.
Thank you. Oh, that's so fantastic. And I'm so sorry about the loss of your dad. Helene and I both lost our dads, too, and it's not a club you want to be in, but we for you and are so sorry for the pain that that must have been. But what an exciting new beginning for you and your mom to have, and I'm so thrilled that we're getting to catch you right at the beginning of that journey. And I
and already engaged with grace and the team, and hopefully we'll be able to introduce you even further to Ruth. She's starting with us in January, and she'll be like I said. She'll be working in many, many countries around Sub Saharan Africa, but to have you right there in Kenya to help us to continue to explore ways to build the message and meet Rhoda and Doctor kahaki kaliki, you'll you'll find there's some wonderful, tremendous resources right there in that country. And I'm so excited for the future there, after what, what they've been through. So it's exciting. But zakira,
what town are you in in Kenya? Where are you? Could you sound secure in a beach town,
yeah. So if, if you're looking at Google Maps, it's you know the enemy. Can
people know that more? And if they don't know the enemy that they know about it, okay,
so you're close to Mombasa,
yeah, hour and a half away without traffic,
and so you're between Nairobi and Mombasa. No, um,
it's more like a close to the Tanzania border, like Mombasa and the Tanzania border,
perfect. We're doing a ton of work in Tanzania too. Oh, I'm so excited that you're there. Are you so excited? It's like, what a big adventure.
Yes. I was like, okay, so am I an ambassador? Now,
we would love to have you as an ambassador. Would you like to be an another? Glow, yeah, yeah. Would be honored to add you to our ambassador list, and we'd love to have you to the extent you're able, like just, I mean doing what you're doing is exactly what we hope for our ambassadors to do. Just help be us in the country, and if
materials help introduce us to people. Help gather stories. You know, we find ways to be additive to the efforts that they have ongoing and to share the materials. And, yeah, I mean, we would love to add you as an ambassador, and we can go through, maybe after the holidays, a little bit more detailed information about all that we have and help you. Do you know, realize, or kind of know where to find all these resources that we have. But for today, it's great just to even explore the idea. I'm so excited. Well, thank you. I would, I was going to wait until you got a little more settled in before I jumped on you with Hey, by the way,
no, we literally, we literally had been hand 10 down. I mean, once we got over, we got over the initial diver, we got over the initial jet lag, and we were just 10 hands on, literally from like maybe day three. Amazing. Yeah.
Maybe on our next call after the holidays are passed and we're gearing up for 2025 it would be great to see if she could pop on to say hello to but so happy that you are surrounded by such love and that you two have each other to enjoy this new adventure together.
Absolutely. Thank you very much.
Alright, well, we will send you some notes on our call today, and we'll put together a little update on you generally, and then we'll also send us your TED Talk link and Helene, I'll send you as we send it back, we'll send you the information on mama. Respond as well, in case you didn't grab it off of the chat. But that would be another first introduction. We'd love to have you meet her, and then see if that's something you'd be, you know, just to meet her, and then see if it's something you'd like to help her in some way too, but we'd love to have you helping us so
on Team directions, but we're right here and ready to work with You and start to explore different ways we can together, gather family stories and be engaged with that Whatsapp group, which I'm so excited that grace put together. I would love for the well Helene and I would love for that to be an example in Tanzania and the neighboring countries in the whole region, to show how parents can support each other through these trials and cheer each other on at the end of the day with these tremendous successes too. So all
excited Absolutely, and I was, I would, if it doesn't already send, when I send a TEDx link, I'll also send this note taker. If it doesn't already send, it to your email,
I love it. You're 10 steps ahead of us, which is always keeping up with zakira has been a I knew the get go, just met you like, Okay, I'm on a book tour, but I could talk for like half an hour.
A woman on the go, and I know there are great things ahead of you, so we're just delighted to explore all of it with you.
