115 – Daniel DeFabio Co-Founder of DISORDER: The Rare Disease Film Festival, Reflects On Losing A Son To Menkes Disease
In this Special Fathers Network Dad to Dad podcast host David Hirsch talks with multi media producer, director and marketer, Daniel DeFabio. Daniel and his wife Tina lost their oldest son Lucas (11) just months ago to Menkes Disease, a very rare genetic disorder. Daniel along with fellow SFN Mentor Father Bo Bigelow (SFN D2D #51) are co-founders of DISORDER: The Rare Disease Film Festival. It’s an emotional story that we’ll hear in two parts on the Special Fathers Network Dad to Dad podcast. This is part one.
To find out about Menkes Disease go to: https://themenkesfoundation.org
To find out about DISORDER go to: https://www.rarediseasefilmfestival.com
To find out DeFabio design go to: http://defabiodesign.com/
Dad to Dad 115 – Daniel DeFabio Part 1 – Co-Founder of DISORDER: The Rare Disease Film Festival, Reflects On Losing A Son To Menkes Disease
Tom Couch: The Special Fathers Network is thrilled to be sponsored by Rubin Law- a multigenerational law firm dedicated, exclusively to serving families, raising children with special needs. It’s not one thing they do. It’s the only thing they do to find out more. Go to rubinlaw.com R U B I Nlaw.com or call (847) 279-7999 and mention the Special Fathers Network for a free consultation.
Dan DeFabio: We just yesterday got a card. It’s unbelievable. Cause it’s been about seven weeks since Lucas passed and this card was from someone we don’t know. Then it was addressed to the family who lost a child and it was signed from a friend you don’t know. And it said that, uh, I’m gonna assume she, she saw us on her way to work each day, waiting for the bus.
And she felt she got to know us and she felt a part of our family. And she wanted to comment on our loss because of that. And it’s agreeing to me and my nine year old son said the message from the people we don’t know. I mean the most and that’s w well, one insightful for him, but, but how amazing to, to, to have a boy who lived to be only 11, but had that kind of reach and impact to strangers.
Tom Couch: That’s our guest this week, Daniel DeFabio. Daniel and his wife, Tina recently lost their oldest son Lucas to Menkes disease. It’s a fascinating, emotional story that we’ll hear in two parts on the special father’s network, Dad to Dad podcast.
Here’s our host David Hirsch.
David Hirsch: Hi, and thanks for listening to the Dad to Dad podcast, fathers mentoring fathers of children with special needs presented by the Special Fathers Network.
Tom Couch: The Special Fathers Network is a Dad to Dad mentoring program for fathers raising children with special needs through our personalized matching process, new fathers with special needs children connect with mentor fathers in a similar situation.
It’s a great way for dads to support dads, to find out more, go to 21stcenturydads.org.
David Hirsch: And if you’re a dad looking for help or would like to offer help, we’d be honored to have you join our closed Facebook group. Please go to facebook.com, groups and search Dad to Dad.
Tom Couch: So let’s listen now to part one of the conversation between Daniel DeFabio and David Hirsch.
David Hirsch: I’m thrilled to be talking today with Daniel DeFabio of Ballston Spa, New York, who is a father of two, and through his DeFabio design, a producer director, writer, marketer, then producer and designer. Daniel, thank you for taking the time to do a podcast interview for the Special Fathers Network.
Dan DeFabio: Thank you, David.
Glad you do this and I’m glad you included me.
David Hirsch: You and your wife. Tina, have been married for 15 years and the proud parents of two Alex nine and Lucas who had Menkes disease and sadly passed away at age 11 less than two months ago. Let’s start with some background. Where did you grow up? Tell me something about your family.
Dan DeFabio: I was born in Germany because my dad was in the military and at age one came to Syracuse, New York, which is where he and my mom and their families grew up. So I lived in Syracuse till age six, but then really grew up from age six to kind of the present in the upstate New York Capitol district, Albany New York suburbs.
David Hirsch: Excellent. So you mentioned your dad was in the military. Um, when did he serve. What was that experience like? And then what was his career? Um, afterwards?
Dan DeFabio: Yeah, he was a captain in the army. It was the Vietnam era. And he, he saw the ROTC program as a, one of the better off, rather than waiting to be drafted.
And because he was an officer, he got an assignment that was not in the combat theater. So, you know, he served during Vietnam, but he didn’t see combat during Vietnam, which I’m sure he was relieved by that. So, uh, that led to a. Me being born in 1968 in Germany of all places. And even though I’m still a U S citizen because it was an army base.
David Hirsch: So, and uh, what did they do as a career?
Dan DeFabio: After I left the military, most of his career was an account at state government, uh, both the New York state labor department and New York state education department. And he’d be involved in if you know, vo-tech programs are both CS programs. So occupational education and sort of assessing which programs are actually leading to people, getting jobs and that kind of thing.
David Hirsch: Okay. And your dad’s still alive.
Dan DeFabio: He is a, um, had a pretty rough health scare with cancer about four years ago. And we all had our fears, but he pulled through remarkably. Well, I think he’s probably more energetic today. I think he’s trying to make up for lost opportunities during that time, you know.
David Hirsch: That’s fabulous.
So how would you describe your relationship with your dad?
Dan DeFabio: You know, growing up, I think we had, we didn’t realize that my sister and I, and she’s two years younger, Mary, I don’t think we realized till we went off to college and we met other people with different backgrounds, but we had an idyllic family.
We had the Norman Rockwell, a picture of a family. And, and in those days what you saw on TV, you know, hate to go leave it to Beaver. We’re not that old, but you know, Most of the sitcom families were happy families. And we didn’t realize until we got to college and she called me and we said, do you realize how unusual it is that we’re normal?
So I’m very grateful for, uh, two parents that still love each other. Uh, you know, of course every family has their problems, but they mostly shielded us from them. We didn’t see very many problems. In my later life. I moved with four friends to California and. Surprisingly, they were all guys whose parents were still together, still happy, still in love.
And we were the kind of guys, you know, in our early twenties that would sit down and have a meal together every night. And we didn’t think that was strange, but other people did. I said, wait, you scheduled dinners and you also down here, like for bachelors, like yeah, we do.
David Hirsch: Yeah. Well that is a, an important realization.
When you think about the family. Um, the decline of family and marriage today is that, you know, something that you might take for granted sitting down for a meal as a family. It’s not the most common thing for too many people.
Dan DeFabio: Yeah. Celebrate it. Now my wife and I with our son, Alex, you know, we that’s our routine, that’s our ritual.
And we point out to him that not everybody gets to do this. And some people, they don’t come home from work till seven and they’re scrambling to get a meal. And before kids bedtime and things like that. So we know that’s one of our blessings.
David Hirsch: Yeah. Well, I think of it as a family value, right. Something that you prioritize and that you just do consistently, and it’s just part of, you know, who the are.
Yeah. So were there any important takeaways, a lesson learned or things that come to mind when you think about your dad?
Dan DeFabio: Among strangers, he would be a quiet type of still waters run, deep type with, with the close friends and family. You see the other sides of him that are sillier and more fun, but he’s a planner.
That’s, that’s the reputation in our family. That he’s the planner. I think even though by career, he was an economist, I think by nature, he’s a engineer. And, um, the joke is that his planning stages take a lot longer than his execution stages. And that’s not too much of my nature, but I certainly keep it in mind.
I, I see where I’m going off in the other direction and I think, well, how would my dad do this? How many more steps of caution would he take before pulling the trigger? You know?
David Hirsch: Yeah. Well, that’s a not a bad trait to have or role model to have. I think I err also in erring on the side of just doing things as opposed to thinking about them or planning them.
Right. Because there’s too many times where you get stuck and sort of over analyzing something and then maybe not following through, but that’s just my own way of thinking about it. So let’s switch gears. From what I remember, you went to Boston college, took a degree in mass communications and then your career, like you’d indicated, took you out to Hollywood of all places.
And I’m wondering, what was it that you were thinking when you graduated and left for California?
Dan DeFabio: You know, when I was applying to colleges, I was going to be an engineer of some type and my. Father, I think was quite approving of that. And the guidance counselors at my high school were excited for that, for the schools I was applying to and getting in.
And then I, I changed. I, well, I started failing. I started to feel calculus is what it was and I thought, why would I pursue math if I’m not doing well? So I, I switched to theater and I think everyone’s faces around me, just fell into disappointment and, um, My dad knew that I also was good at, um, cartooning and illustration and stuff.
So his advice to me at the time he quoted, if you know, Milton Caniff who wrote Steve cannon comic strips, he had a line and my dad found it and quoted it to me, said, stick to your ink pots kid, actors don’t eat so good. The great thing about both my parents was they’ve always been supportive, but they’ve been supportive in the.
Big picture, you know, so certain particular endeavors of mine, they might not be fans of, but if it comes right down to it, you knew you had their support, which is great. So they let me go off to college and study what I wanted, which turned out to be not theater, but mass communications, which was close enough.
And, um, I graduated and had a little trouble finding a job. This was the early nineties and there was a bit of a recession. In fact, my father, the economist had prior to my graduation, predicted based on economic models and stuff had said, uh, you’re in great shape because there’s a population dip and you’re in this generation.
That’s smaller. So when you graduate, there’s going to be tons of jobs and you’re going to be in great shape. Well, like every economist. The rarely correct. So I graduated into a recession of sorts and can’t find a job. And so my first job was actually government work, which probably suited my parents cause they were both in it too.
And after it was the U S census of 1990 and after a bit of that, I said, and, and they still laugh at me too. To this day. They said, I got to get out of this and get into something. More worthwhile. And I said like, what? And I said, like advertising and they laughed their heads off that the noble pursuit of civil service wasn’t good enough for me.
And I had to get into advertising buildings. So, um, eventually I was working just for fun with a group of friends on a comedy TV show that was on about 12 public access stations. And this was pre-internet. So we couldn’t, we couldn’t put it on YouTube or anything. And. We got it into our heads, that we were pretty good at this and we should move to Hollywood and make a go of it.
So we drove across country and four cars and set up what we thought would be our brilliant careers and things didn’t go quite as well for all of us as we hoped. But most of us ended up working in movie marketing and I did too.
David Hirsch: And how long were you there in Hollywood?
Dan DeFabio: 13 years. Oh my, yeah. And it was my five year plan.
I said if I don’t make it in five years, I’m outta here. And after 13 years I said, okay, I’m out of here anyway.
David Hirsch: So, um, when you left Hollywood, where did you go or what were your, what were you focused on?
Dan DeFabio: Right. So I had met my wife, Tina, and, um, yeah, we’re planning our life together and living in a small one bedroom Hollywood apartment, right near where they do the awards for the Oscars.
You know, as we talked about what our life would be together, would it be buying a house and having kids? And if it was it probably wasn’t going to be in Hollywood. And then we started to actually throw darts at a map to pick, you know, the next city, maybe Portland, Oregon would be good, but we didn’t really.
Have a real strong connection to any of these places. And I assumed we were talking about cities only. And then at one point she was watching the show I’m Gilmore girls, which takes place in that small Connecticut town and set up. I might not mind a small new England town. And I said, well, if you. I think that, what do you think about where I grew up, which is upstate New York.
And I showed her, um, Albany, the Capitol and she said, Oh no, no, I don’t want to live there. And I showed her Saratoga, which is a little more of a resort town, a former resort town. And she said, Oh, I could, I could live there. And I said, well, how about just next to Saratoga? Which is always been charming to me, Boston spas and even smaller former resort town.
Both based on the healing Springs in the 18 hundreds, which I am kind of fascinated with. I made one of my first documentaries about that time. So she said, yes. And so all of a sudden I’m dragging my Northern California girl to the Northeast and she likes it here more than I do now. She really values the change of seasons.
Whereas every winter, I think, why did I leave Los Angeles? It’s warm there.
David Hirsch: So DeFabio Design is the name of the company. Yeah. And I’m wondering if you can give me just a quick overview on that.
Dan DeFabio: Yeah, that is essentially me as a boutique agency and I’ve been doing it for 15 or more years, mostly TV commercials, uh, sometimes other kinds of video marketing or social media, Instagram video marketing.
And some other things like poster design or package design, but the main thrust has been video. And a lot of it has been for live performers, live entertainers, unfortunately, the climate we’re in and there’s no live entertainment. So my career, my home business has taken a real hit and I am now I’ve been, this has been on my mind for awhile.
How did I balance my passion, which is my rare advocacy work with my real. Paid client work. And now the pandemic I think has forced my hand a bit. So I’m actually, I’m looking for new work. I’m looking for jobs that are hopefully in the rare diseases space or the advocacy space. And, uh, we’ll see what the next chapter is.
And I don’t know that I would’ve made the choice to shutter my business, but would it a bit of a push from pandemic? I think. This is a good move.
David Hirsch: Yeah. Well, sometimes one door closes another opens. Maybe that’s the, the point in time that you’re at or where at, I should say. Um, and, uh, not to look back too strongly, but is there a particular project that you worked on for a particular performer that comes to mind that said, Oh, this, this was something I’m, I’m really proud about.
Dan DeFabio: You know, one I get to work not directly with, but for some of my heroes. So John Cleese from money Python and I got to animate in the style of Monte Python because he was doing a, a tour with a speaking question and answer period, following the Holy grail screenings. So my version of. Terry Gilliam style animation is, is out there as a John Cleese commercial.
And that was, that was a great moment for me, but, uh, another was a project called the Ursula project, which was measuring not just carbon footprint, but the entire. Impact both social and economic and natural resource impact of making something, making a hamburger or whatever. And they were going to attribute a score to that.
And I did a, you know, it’s called a paper cutout style animation to explain what that project was all about. And that was one of the things I could feel the most good about. And that was in the days prior to my rare disease advocacy. So. It was social good and I was getting paid for it and I felt really satisfied with that.
David Hirsch: Excellent. Well, I look forward to learning more about that, at least on a personal level. Let’s switch gears again and talk about special needs first on a personal level and then beyond. So I’m sort of curious to know before Lucas’s diagnosis, did you or Tina have any experience with the special needs community?
Dan DeFabio: I don’t think we did. You know, I tried to think. The one may be possible example. And I would have been maybe 11 years old staying with my dad’s parents in the summer. They’d tend to take us for two weeks or so in the summer. And my grandfather had a stroke and, and I never knew that kids could help adults.
And it was such a simple thing that he needed help with his shoes and socks or something like that. And it just opened my eyes that wait, this, this adult is not. Fully capable and it fell to me just because I was the only one there at that particular day. And so that was my, really my one and only experience.
And as I’ve learned more, and of course your whole world changes and your worldview changes, I’m a bit embarrassed that I didn’t know, I wasn’t tuned in. And I think back to people who, you know, a friend that had a sibling who was severely special needs and. I don’t think I was unsympathetic, but I wasn’t actively sympathetic.
I wasn’t able to understand what that meant in their family life. And I mentioned too, a story of, um, you know, prior to having Lucas and understanding it firsthand when people would talk about the special Olympics and they’d use the example of a whole, my kid might only run. 10 meters, but that 10 meters is like running a full marathon for you.
And I’d always not quite believe that. And I wouldn’t even believe that they believed it. I thought, is that just something you tell yourself to make yourself feel a little better about where you’re at and now that I’ve lived the experience to see Lucas grasp a pencil. And make a scribble that is like, if he published a novel, we pop champagne that day.
That was, that was amazing. And I, I get it now. And beyond that, I think when you’re in this space and you’re vulnerable because of it you’re open and new ways. And. People open themselves up to you in ways they wouldn’t. So not just rare disease families, who, of course we feel with some common bond with them, but you know, the person who’s got an angel parent or, you know, whether it’s double or whatever now they feel they can share their story.
Whereas maybe before they thought they had to keep it on the. Happy pleasant conversation level. Now we know we can all get real because I’ve got a visible indicator that that is my life with my son. You can see him in a wheelchair and know that I’m dealing with something, you know? Uh life-changing yeah.
David Hirsch: Well, profound. What I think I heard you say, if I could paraphrase, is that a. You can celebrate the small victories, uh, with purpose and enthusiasm, um, as opposed to just observing things from a distance. And when you go through some life challenges or changing situations, it allows you to better understand what other people are going through.
Maybe not the same situation, but you can relate on a different plane or level than you would be otherwise. So again, thank you for sharing.
Dan DeFabio: Yeah.
David Hirsch: So, um, What does monkeys disease and how did the diagnosis come about?
Dan DeFabio: So Menkes disease is rare. Some will say ultra rare. It happens in about one in 150,000 births.
Almost always boys. There are even more rare, extreme cases of girls, but generally women are carriers not symptomatic. Um, And it means that your ATP seven, eight gene is mutated or, or deletion, or, uh, I’m not, not producing the protein properly that the protein would transport copper. And who knew. I certainly didn’t know prior to our diagnosis, how.
Important copper is in our metabolism. We only need a little bit, but it’s got to do its job. And its job is to develop hair, brain and muscles and some other things. So for Lucas, I suppose he was fortunate that his leaky splice site mutation meant he was transporting some copper, just not as much as he should.
And the real cruelty of monkeys is that. If you’re diagnosed in the first 10 days of life, there’s a treatment it’s to give petunias copper shots, copper history, and that in boys like Lucas, if you’re able to transport some copper, putting more in your system gives you a better chance of it reaching the levels you needed to reach.
Okay. So in our case, Lucas was in the hospital. He was born with a skull fracture and there was, uh, exams by neurology because they feared maybe there was brain damage. They determined there wasn’t brain damage. But nevertheless, we spent our first 10 days a NICU unit and those 10 days were the times when people were looking at it and had anyone known to look for monkeys disease.
We would have been on a vastly different path. And those boys that are treated, some of them, you know, they walk and they talk and they play soccer and they play the drums and they graduate high school. And, you know, you can see they have problems, but they are much closer to the typical life span and lifestyle than the boys that don’t get the treatment.
So we’ve always. You know, no one did anything wrong. You learn quickly that 7,000 rare diseases, doctors are not going to know very many if any of them. And so it’s, it’s not to fault anyone for not discovering our child’s diagnosis faster, but it does seem cruel that had we known in those first 10 days in the hospital, there was a remedy available.
David Hirsch: Is there something just to drill down a little bit? That can be done, um, sort of in a mass way so that when there is a child who is, isn’t a NICU that there’s a, a larger series of tests are broader level of testing that goes on just by chance to get some of these things, or is that just not realistic?
Dan DeFabio: Um, you know, it’s funny when Lucas was born in 2008, it was unrealistic. And I’m glad to say that the monkeys foundation who I tried to help, but really they, they would be doing it without me. Uh, they’ve done amazing work and they’ve gotten a newborn screening exam that now works. It had been more complicated, the simple blood tests that so many other tasks rely on.
Wasn’t. At the time going to work for monkeys diagnosis, but now it can. And so it’s 99 point, whatever percent reliable. And we have it in about six States. And if you know how the newborn screening exam works, once it’s viable, you have to pretty much go state by state and convince them to add it to the RUSP the recommended universal screening program.
So I’m glad that monkeys is now on that. A list for six States and we’re working on, I think Ohio and New York are next on the list. So, you know, obviously the best answer is to get it on all 50 States and get it international. And, you know, maybe that will happen. And I’m also a bit proud that because of my work on the film festival, which has always included the monkeys disease film, I met people at the every life foundation and one of their mandates is to get.
Um, good candidates for the RUSP on as many States as possible. And so now basically through me, the EveryLife foundation is working with the monkeys foundation and they’re combining their efforts to get that exam on more state’s requirements. Well,
David Hirsch: that is another silver lining to the family story. So thank you for sharing.
Um, I’d like to go back to. When Lucas was young, it was like shortly after he left the hospital or like we just missed the 10 day window. It was a number of years. And what was it that sort of led to that diagnosis and what was going on in your mind or Tina’s mind at the time when you learned about the actual diagnosis?
Dan DeFabio: Yeah, he was our first child. So we had all that sort of new parenting. What you don’t you’d think, you know, and you don’t know. And you compare to your friend. I had friends that had children within months of ours, and I’d say, you know, isn’t it horrible how they never sleep? What are you talking about? Our kids sleep like, huh.
And so, you know, he is boy with a skull fracture and spent those early days in the hospital and he was a couple of weeks early. So. At age four months when he missed milestones, we thought, well, is this because he’s recovering from the skull fracture or is this because he was a couple of weeks early? And so any difference we saw compared to a friend’s child at the same age, we’d think, well, maybe that’s the explanation, but then at age eight months, he not only.
Was behind for milestones, but he regressed. So his one ability to roll from his back to his stomach, he lost that ability. And then we weren’t able to rationalize a way, what situation we were in. We had dealt with some early intervention specialists and they had also said, well, you know, he might catch up.
He might catch up. But at that point, that was like a clear line. You need to look for something here. And that means go talk to a geneticist. And we did that and you know, I know other people’s diagnostic journey can be long and painful and inconclusive and that’s its own horror to deal with. So it’s a very weird thing to say.
We are lucky to get this diagnosis because the diagnosis is horrible, but we were lucky to get it quickly. Uh, he was nine months old and we saw a geneticist. And within a couple of months, he knew what it was. And as rare as monkeys is, we were lucky that in this smaller house, little market of Albany, New York, here’s the geneticist who had seen two other cases of Menkesis.
So when he looked at glucoses hair, which monkeys is also called kinky hair syndrome, Lucas had unusual hair. It would, uh, break away wherever it rubbed on a bed or a surface. And. It would be twisted and they call it, uh, I think pilly Torchy is twisted hair and the geneticists rubbed his head and looked at the hair and said, I think we’re looking at a copper syndrome and.
Good for him that he was on his game. He knew his stuff. Of course, I immediately went home and looked up copper syndromes and there’s two, and Wilson’s disease is more for adults and it’s mild. Or you can have a pretty functional life. If you have Wilson’s disease, you have your problems. Of course, I’m not dismissing that, but it’s not fatal usually.
And then the other was Menchies Betsey’s. And so I was silently rooting that my son would have Wilson disease, not monkeys. Now my wife at this time had said, I’m not going to Google this stuff. I don’t want to know. Don’t tell me. So I didn’t tell her. And we waited in, in January, I think mostly because the geneticists wanted to be kind and let us enjoy Christmas with our child without the burden of diagnosis.
But shortly after Christmas, he brought us in for the diagnosis and it was monkeys disease. And, you know, it was, it was crushing. It was, you know, there’s, there’s a joke about, it’s a bad joke about geneticists that give you these. They say, you know, they’re proud, they’re happy. They’re, they’ve done their job.
Well, they’ve arrived at a diagnosis and it’s a success for them, but yeah. They’re telling you like, congratulations, you have a diagnosis, your child is going to die. You know, they, some of them don’t have the best bedside manner. And that’s why I give a lot of credit to genetic counselors. They usually step in there and, and soften those blows as much as they can.
But the reality is the reality. You can’t sugar coat. In this case, a lifespan of three to 10 years.
David Hirsch: It seems overwhelming. Good news that you get the diagnosis, like you said, but bad news that it’s such a harsh and brutal reality. Was there some meaningful advice you received shortly thereafter that helped you and Tina put this in perspective?
Dan DeFabio: Yeah. I don’t know really where the advice came from, but I, I, it may have been something my wife already knew she had dealt with the loss of her mother. We realized somewhat early on what, what we are grieving. You know, obviously our son was not dead. You know, he was, he was given a horrible diagnosis, but we still had a son.
And we realized, I think mostly my wife realized what we were craving was our expectations. You expected to have the kind of kid that would go to school and make his friends and go on to live life and maybe have kids of his own and, and, you know, maybe be an astronaut or maybe be the president of United States or all those wonderful things, you know?
And, uh, and that’s gone, that’s off the table and that’s what you’re sad about. And that’s, that’s grief. That’s the stages of grief. And. The weird thing for me to learn about the stages of grief was that just because they list them in order doesn’t mean you live them in that order, you know, they come and they go and they come in different orders and you’d go back to the first stage again, before you ever finished the fourth stage, things like that.
So that was actually one of the first advocacy pieces I did, which I wrote an article, which was called how parenting a dying child changed all my expectations. And. If you can change those expectations, you can, I think have a much better relationship with your family, your child, the people around you.
Once we realized Lucas was not sad that he wouldn’t be an astronaut, you know, that was us. So what is Lucas happy about? And we focused on that and my wife always says that I’m the best thing that gets us through hard times with Lucas. Is Lucas Lucas’s smiles and laughs. They pull you right out of whatever pity party you had fallen in, you know?
And he even had a devolution sense of humor. You know, if we clumped our head on a shelf or hit your thumb with a hammer, he’d laugh his head off at you. And then you snap out of it a little bit and you realize, okay. Maybe we can laugh at this moment, maybe things aren’t so bad. And I also think that his role in the community, we live in a very small town and people quickly learned what our situation was.
Even people that didn’t know us very well. And it’s always been very touching, you know, how they can care and reach out and support from afar sometimes, or sometimes it draws them in clothes and. Again, Tina said, you know what Lucas is doing just by being him and being the cute kid in the wheelchair with a big smile is he’s reminding people that no matter how bad they have it, they could choose to smile.
There might be someone who has it worse, but there’s still joy in very tough circumstances. And that’s what Lucas would always was. He was always joy in the face of all of it.
David Hirsch: Yeah, well, it’s remarkable. It’s profound. And, uh, you know, the impact that some individuals have young people like Lucas and other people five says it’s palpable.
And you can’t say that about typical kids. They just sort of. Come and go, right. But it’s those kids that are different that really stand out and I think make an everlasting indelible impression on people’s lives. So thanks for sharing.
Dan DeFabio: It does, you know, we just, yesterday got a card. It’s unbelievable.
Cause it’s been about seven weeks since Lucas passed and this card was from someone we don’t know. And it was addressed to the family who lost a child. And it was signed from a friend you don’t know. And it said that, uh, I’m gonna assume she, she saw it on her way to work each day, waiting for the bus.
And she felt she got to know us and she felt a part of our family. And she wanted to comment on our loss because of that. And it’s staggering to me. And my nine year old son said the messages from the people we don’t know mean the most. And that’s well, one insightful for him, but, but how amazing to, to, to have a boy who I lived to be only 11, but had that kind of reach an impact to strangers.
Tom Couch: And that brings so us to the end of the first installment of David Hirsch’s interview with Daniel DeFabio. Listen, next time. As we continue to hear the story of Daniel, Tina Lucas, and Alex DeFabio that’s on the next special father’s network, Dad to Dad podcast, the Special Fathers Network is a Dad to Dad mentoring program.
Fathers raising children with special needs through our personalized matching process, new fathers with special needs children connect with mentor fathers in a similar situation. It’s a great way for fathers to support fathers go to 21stcenturydads.org. That’s 21stcenturydads.org.
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