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Mallory Cyr is a young lady who works with Children & Youth with Special Healthcare Needs. She has done a lot of work for Disability Justice & Health Equity, but Mallory also has an interesting story from the early 90’s that Michael Jackson fans might be interested to hear.
The story features briefly in my book “Humanitarian – The Real Michael Jackson.”
In 1993, Michael Jackson sent a letter and a donation to an 8-year-old Mallory Cyr, who suffered from microvillus inclusion disease, which limited her ability to eat. She received intravenous feedings. Michael responded to a letter-writing campaign organized by school children for Mallory. In his letter, he wrote "I am sending you all my loving and caring, Mallory, along with the enclosed gift, which I hope will help nourish you and keep you strong." The donation amount was undisclosed.
Mallory so graciously agreed to tell us about her story, so after a lengthy break from the podcast, I hope you enjoy this new episode…
You can connect with Mallory HERE
Get the book "Humanitarian - The Real Michael Jackson" HERE
Watch the documentary HERE
Transcript
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Thanks listeners for joining us once again.
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that mentioned you and you commented and said you'd love to come on and chat with me.
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So I'm very, very appreciative.
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Thanks for commenting and thanks for chatting with me.
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How are you?
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I'm good.
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Yeah.
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Thanks for having me.
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It's funny because, you know, over the years I've seen different posts and, you know, things about my experience and I never really thought to sort of join the chat and something came over me that day.
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And, you know, I looked in your your book and your work and I thought it was a really cool perspective.
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So I figured why not see if we could connect and it worked out.
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Thank you.
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It's so funny because as we were chatting last week and I said sometimes the stars are the line.
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I had you on my list.
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I've got a list of about 120 people that I want to speak to and I had you on the list and I'm slowly getting through it because I work full time.
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I do this podcast in my own time.
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So I was slowly getting through that list and I kept seeing your name and I'm like, yeah, I'm going to get to her.
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I'm going to get And then you commented, and I'm like, this is perfect, that the stars align.
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And when the stars align and things just happen coincidentally to make things happen, I know, I feel like I'm on the right track.
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Yeah, definitely.
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And it's funny because it's not something I really talk about.
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I also have a career and a full-time job, and this feels like such a blip on the radar of my life.
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But it felt kind of neat to...
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Cool.
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I
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look forward to hearing it.
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It is only a small paragraph in my book.
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It's on page 67 for anyone that wants to see it.
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And it says on June 18, 1993, Michael sent a letter and a donation to an eight-year-old Mallory Sear of Sabotus in Maine.
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Is that how I say it?
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Sabotus?
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Sabotus, yes.
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Sabotus.
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Mallory suffered from a microvillous inclusion disease, which limited her ability to eat.
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and you received intravenous feedings michael responded to a letter writing campaign organized by school children and in his letter he wrote i'm sending you all my loving and caring along with the enclosed gift which i hope will help nourish you and keep you strong and so i obviously want to ask you a little bit about the letter writing campaign but i was wondering if you could first take us back to pre-1993 um and what was it like being mallory pre-1993 you childhood where you were growing up and how was that?
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Yeah.
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Yeah.
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I still live with a rare disease.
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I get all my nutrition from TPN, total parenteral nutrition.
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And so my condition is something I still live with.
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And I have a sister who also has it.
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I had a wonderful childhood growing up.
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My family is amazing.
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We always have lived life from a it's not a no we can't but how can we perspective and so I was very included in my community growing up I had a lot of friends we had a wonderful neighborhood that we lived in and my school was always very supportive so this all happened my mom was actually pregnant with my sister at the time and due to my disease, I had some bone and joint issues, and I underwent a really big leg surgery that had me in a wheelchair.
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We needed an accessible van, and I was getting all of my specialty care in Boston at the time.
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So we were going back and forth from Maine to Boston, and our community really just wrapped around my family.
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We were going through some difficult times, And it was just one of those periods where everything happens at once.
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And, of course, as you can imagine, you know, the adults and the teachers were kind of like, okay, you know, bless your heart, Michael Jackson, I'm sure he has some things going on.
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And they did.
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You know, these second grade kids all wrote letters and Crayola marker and drew pictures and everyone was my best friend.
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And
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off
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the letters went and we kind of forgot about it until we didn't.
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Was she a friend of yours, the girl that came up with the idea?
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She was, yeah, I mean, I knew her.
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She was a little bit older than me, but everyone knew me and I sort of knew everyone.
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It was a very small town, very small community.
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Even, you know, once I got into high school, it was kind of all the same kids.
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So we had a really close-knit community.
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That sounds really nice.
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And I know it's hard, and I hate asking, you know, what do you remember about being eight years old?
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Because, you know, we don't remember a lot.
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But do you remember?
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Was there a goal of having a certain amount of letters to write or was it like, oh, we're going to write at least a hundred or?
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Yeah, I'm not sure.
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I think it was like across all ages.
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It might've been like within the school, but I also forgot the group that organized all of the fundraising campaign were called Mal's Pals.
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And so there were t-shirts and buttons and I'm sure I still have some of the buttons that I've given out when I've gotten older.
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So it was kind of this core group of people that were my friends' moms and teachers that I had had.
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And so I think she was probably a part of that group and kind of took that on as a fundraising idea.
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That
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sounds like a really nice community to be a part of.
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We were very, very fortunate.
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Very fortunate.
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I'm presuming you wrote a letter as well?
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I don't think I did.
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I remember going to the events when I could, but I was in a lot of pain at the time.
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I had metal pins, like fixators in my legs, and they were there for months.
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So my mobility was very limited, and I would show up, but it all was incredibly overwhelming.
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So I don't think it was something I participated in.
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It was sort of just all happening around us.
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And a lot of things that I think I probably didn't even know were happening because I was also trying to do school and be a person.
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Yeah.
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Well, you sort of said that, you know, oh, bless her heart.
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Everyone's like, yeah, okay, write your letter to Michael Jackson.
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We'll see.
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So there wasn't really an expectation of anything to evolve from this response.
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No, not at all.
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I don't think anyone expected any kind of response, let alone what we received.
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And so
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you did get a
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response.
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Tell us about that.
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hugely helpful to my family and they were extremely extremely grateful
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yeah i could imagine and thank i hope your mom was sitting down at the same time she was
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she was we we made we made sure was like want to minimize the stress of all of us
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and that's so nice i mean what he said in that letter about um i hope this will help nourish you and keep you strong he obviously knew of your condition he had read about it he had taken it in and it wasn't just off the whim sort of yeah respond get my secretary to respond it was something that he must have taken a bit of an interest in yeah
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i i like to i like to think that um and he also um he was supposed to call me on the phone but due to the timing and like the events that transpired like shortly thereafter that wasn't a thing that happened so it but there was supposed to be more of an interaction i think
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was that in the letter did he say i'm going to give you a call or i plan on trying to give you a call?
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I think so.
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It was somehow conveyed that he would try to communicate with me by phone at some point.
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And, you know, it's so funny because, you know, at the time I was eight and I didn't really like talking on the phone like as it was.
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And I would just remember being like really nervous that he would call me and I would be like, I didn't know.
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I know I'm sure it would have been a great conversation, but I just remember being very like anxious because I think we talked about last time, you know, back in the day with the landline, you didn't know who was calling.
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You didn't even have an air code.
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So, you know, it was like, could be my teacher, could be Michael Jackson.
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Who
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knows?
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So every time you went to the phone for that next couple of months, you must have been really nervous.
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Yeah, it was for a little while, actually.
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It was just, you know, the suspense.
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But I am a little sad that we never got to connect as humans because he seemed very cool But just having that small memory is really special.
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Yeah, it's very special.
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I have to ask, do you still have the letter?
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So after we spoke last time, my mom literally went in the basement and we cannot find it.
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Oh,
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no.
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I don't.
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And it's really funny because of all the things that she keeps.
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We cannot put eyes on it.
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We have articles about it and we have a whole fundraising book, but she She said it's not in there.
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But who knows?
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It might take a second set of eyes to go through the basement.
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It's like your car keys.
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I think you always find them when you stop looking.
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One day they'll pop up somewhere.
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Well, and I think this was, again, like 31 years ago.
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We've lived in multiple homes.
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At one point, our basement flooded.
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We lost a lot of things.
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So unfortunately, it's like through life's transition, it may not be something we still have.
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But we have the memories and it's out there on the internet.
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It is.
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I'm making sure it keeps going out there.
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Yes,
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yes.
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So after you get this letter, I suppose you're obliged to go and report back to all these kids that wrote the letter.
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You have to go and say, hey, we got a response.
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How was their reaction?
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I
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think people were just shocked and amazed.
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I think it might have been on the news and we just were like, wow, the power of Yeah.
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Yeah.
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Yeah,
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it was incredibly helpful.
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My dad had been laid off from his job.
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We were traveling back and forth from Boston to Maine.
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We were able to, you know, get the accessible van that we needed and just support our family during a very difficult time.
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And, you know, I won't disclose, you know, what it was, but I will tell you, it's not something I'm still existing on today.
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And it's wouldn't go as far today, but it helped my family during that time significantly.
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A hundred percent.
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And I suppose just the idea of accomplishing that goal and hearing back could be probably even more important and stay with you for longer than what the monetary donation might be.
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Do you feel like that response and just getting the letter back has stayed with you?
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I know you do a lot for others now.
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Has Michael's letter and of inspired you to do things for others because I know you do that now.
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Yeah.
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Yeah, it's really interesting.
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And I was really happy to connect with you and see the work that you're doing.
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I've written a chapter for another book about his humanitarian efforts.
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And I think I have sort of intrinsically, you know, thought about the person that he was and the things that he's done.
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And I know a lot of times that that isn't the things that the media likes to highlight.
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So I do, I think.
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carry that with me in the work that I do and my advocacy and being being I think A person who sometimes it feels like the world isn't ready for the changes I want to make and the things I want to speak out on.
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And I feel like Michael was really ahead of his time in the way that he thought about things, in the art that he created.
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And I truly believe that he just wasn't, people weren't ready for him all the time.
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But the good that he did is what I remember about him.
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Yeah.
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And so you've gone on to become a national advocate for young adults living with disabilities and complex medical conditions.
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Tell us a little bit about what you do now.
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Yeah, so my career has really been built on improving systems for medically complex young people with disabilities as well as their families and improving health care systems and access to services and supports and also really empowering young people and families to be their own advocates because I think we in America exist in a really complicated just inequitable system for all people and growing up myself with medical needs and disabilities and my husband has disabilities really viewing the world through that lens and helping to empower and educate You know, people who are navigating the system, but also those that are running the programs, creating the policies.
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I also do consulting with organizations who want to better work with or involve people with disabilities.
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I help plan inclusive meetings.
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I love traveling, you know, viewing hotels from an accessibility lens and learning, like, really how we can do better together.
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from a place of people don't know what they don't know.
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And for things that aren't the way that people view the world, sometimes it just takes someone to go, hey, did you think about it this way?
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Or what if we did this?
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And then folks, it's sort of like give someone a fish and they eat for a day and teach them to fish.
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And so if you teach someone to view the world through a different lens, then they're then able to be part of that change as well.
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So I guess I always say my goal is to like work myself out of a job.
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But I don't think that's going to happen anytime soon.
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But I do feel like I've impacted, you know, in a lot of ways.
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A
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hundred percent.
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And I think part of the reason I didn't contact you before we connected was because I like to research everyone that I talk to first.
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And there's so much to research about you because you've done so much.
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So I've read a lot and hats off to you.
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You've done so much.
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You have made an impact.
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I've seen some of the things you've been doing and the work you've been doing.
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It's unreal.
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It's good to see people doing what I think you're passionate about and making a difference in a good way because we all need that.
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And you sent me a photo during the week of you with Mr.
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Barack Obama.
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How the hell did you get that to happen?
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Yeah, it's funny, you know, I think the Michael Jackson experience was just sort of like one celebrity encounter I've had throughout my crazy random life.
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Always fun party stories.
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But yeah, I was very fortunate to be invited in 2011 to a disability policy seminar at the White House.
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And my friend had given my name to the specialist assistant on disability policy, and she had worked at the White House.
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And when I got That letter, which was by then an email, I think I mentioned to you, you know, my dad thought, oh, that's that's spam.
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That's a that's a joke.
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I don't know, dad.
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This is a really good let you know, it's on letterhead.
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This is I think this is real.
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And so I texted my friend and said, you know, did you give my name to someone?
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And she said, I did.
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Can you go to D.C.
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in two weeks?
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And so I scrambled and pulled it all together.
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And And I actually didn't know that we were going to meet Obama.
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It was just there was a policy session where we got to ask questions and hear from folks.
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And then there was a reception, very nice reception.
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And all of a sudden, people just started standing up in a line.
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And I had no idea where this line was going.
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So I'm just in line with my champagne following people.
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And, you know, people were like, he's here.
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This is an unannounced.
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appearance and it was it was just amazing um he's so so kind and so genuine and so funny i i wanted to stay and like you know have dinner with him and chat more but it was an amazing experience
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what was the seminar that you were there for
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so yeah so we were it was more of like a town hall format where the folks focused on disability and inclusion at the white house um just talked to us and shared their gratitude for the work that we were doing in our communities and they wanted us to know that we were welcome there and that our voices mattered and we were able to kind of ask questions and it was a different time where we felt really valued and that we were involved in the policy making process.
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So it was very cool.
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That's very cool.
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I wonder we can live in a time like that again.
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Me too.
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Was Michelle there?
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Did you get to meet Michelle?
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I did not.
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I saw the dog being walked in the garden, but I did not see Michelle, unfortunately.
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I love the Obamas.
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They come across as really beautiful
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people.
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I miss them a great deal every day.
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I'm sure a lot of Americans would.
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Very interesting watching from Australia what's happening with America and their their politics at the moment.
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It's alarming.
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And I think even more so why it's so important to highlight stories like these and folks that are seeing the good and continuing to do the work because it's getting harder and harder with access being taken away for folks that really need it and just the divide that we're seeing politically.
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It's pretty scary.
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Yeah, we're going It
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makes it harder and even more important to do this work.
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