On this Special Fathers Network Dad to Dad podcast It’s the conclusion of host David Hirsch’s conversation 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 two.
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
To find out about Every Life Foundation: http://www.everylifefoundation.org
To find out about Ronald McDonald House Charities: http://wwwrmhc.org
Dad to Dad 116 – Daniel DeFabio Part 2 – 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: 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 as he is 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 is 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.
Tom Couch: That’s our guest this week, Daniel Daniel and his wife, Tina recently lost their oldest son Lucas to Menkes disease. This is the second of two parts of a fascinating emotional story on the Special Fathers Network Dad to Dad podcast.
Here’s our host David Hirsch.
David Hirsch: Hi, and thanks for listening to the Dad to Dads 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 your 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 the conclusion of the conversation between Daniel DeFabio and David Hirsch.
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, tenet 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 going to 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 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 lived to be only 11, but had that kind of reach and impact to strangers.
David Hirsch: Yeah. It’s certainly powerful, very powerful. Um, not to focus on the negative. What are some of the bigger challenges that, uh, you and Tina encountered along the way?
Dan DeFabio: I think almost every rare disease family will tell you about isolation. And, uh, I’m an extrovert. My wife’s an introvert. So sometimes isolation suits her better than it suits me, but it surprises you the ways isolation happens.
And sometimes it’s you choosing it either by necessity or by fatigue or whatever, but you know, some friends step up. And can really be there in, in your, uh, times of need and some friends run for the Hills and it was amazing to see that. And I get that, especially if you’ve just had a child and now you see a young child that’s going to die.
You don’t want to be around that reminder of mortality in, you know, so I get how and why it happens. Yeah. Make it easier for us. And just simple things, you know, like, uh, you get invited to some social thing. Well, it’s not easy to go with the wheelchair or it’s not easy to go with a schedule you’re on. So you say, no, you say no two or three times.
But really you want them to keep inviting you, please invite me a hundred times because on a hundred and second time, I’m going to say yes, you know, and, and that’s just not always going to work. So isolation is definitely sort of top of the list. I think whether it’s physical or social or emotional isolation.
And then of course there were the challenges that are access literal mobility access until we got a proper wheelchair when Lucas was young enough to be on a stroller. Some people would look at us like, why aren’t you, you know, why aren’t you able to get through this spot? And why are you trying to squeeze that stroller into this space?
And because they didn’t know, they didn’t know. We couldn’t get the boy out of his chair to walk, you know, or sit in a proper seat. And then when we got a real wheelchair, at least that visual cue was there for people to understand, Oh, he needs a cutout in the sidewalk. He needs a ramp instead of stairs, those things.
But even so, you know, older buildings are grandfathered and they don’t have to have ramps. And the aisles of the supermarket might be perfectly wide for me and you with a cart, but they’re not so wide for the cart plus the wheelchair. And that was terrible too, because Lucas actually loved to go to.
Grocery stores or shopping at H and M stores for if you know those, I think it’s because of the music they play. He loved the agent. Okay. Especially as he got a little bigger and heavier, we shied away from taking them on those errands. Cause it’s less easy to push the wheelchair through the world. So that was another challenge.
I think just the real accessibility things, you know, finding the handicapped parking spot and things like that.
David Hirsch: Well, thanks for sharing. Uh, from what I heard you say, it, it was the isolation, whether self-imposed or otherwise, and then, um, the issues around access, it sounds overwhelming, like you said, either physically, socially, or emotionally or all the above.
So was there a turning point that you can look back on and say, I think we’re okay. There was some level of acceptance for what your family situation was that allowed you to power through and, you know, move at a faster velocity or step with some enthusiasm.
Dan DeFabio: There definitely was a turning point. And I can’t remember exactly when it was. I think we spent a few years just struggling to adapt. One thing that helped of course, was around when Lucas was stage two, we really, he needed to be on a feeding tube against apparently the advice of experts that said, Oh, no, he doesn’t really like, Oh yes, he does. And that made our care for him a lot easier.
And it probably extended his life significantly. He was so thin at age two, he was, he was wasting away. And if we couldn’t tube feed them, who knows what had happened would have happened no around the same time we had our second child. And of course changes things you have to focus on. What’s good for all your children, not just the one with the special needs.
And so that was probably a turning point. In fact, when Alex came home as an infant, we worried about what is a crying baby kind of do to Lucas. So we kind of coached and condition Lucas that, Oh, Alex baby, Alex is crying. Isn’t that funny? And so we did way too good. A job at that because Lucas would laugh his head off.
If Alex cried. But it, it was wonderful because Lucas never loved anyone more than he loved Alex. And if Alex, I did the least little bit of a thing, like touch him, you know, the touches cheek or something, then Lucas would laugh and smile. And it was, it was the greatest thing. In fact, for most of Alex’s life, you know, he was young enough that we didn’t feel he should be involved in Lucas’s care.
You would just be Lucas’s brother. Um, but. Now he’s nine. And just in recent months we thought, well, maybe, maybe he should be involved in some of the simpler things. So can you hold this food tube and plug it into Lucas so that he can burp and Alex like, Ooh, that’s gross. I don’t want to do it, but he did it.
And when he did it, Lucas would laugh his head off. So then we thought we should do more of this just to get the laughs and sure enough, I’m sure will do around to the story of the circumstances of how Lucas died. But yeah. He had been in the hospital for a week and then got home for one night. And in that one night we got one smile out of him.
And the smile was because Alex did the food tube and Lucas is tired or as struggling as he might’ve been, he looked over at Alex and he smiled and we’re forever grateful. That’s our, that’s one of our last moments as a family together. And it it’s a smile and it’s because of Alex.
David Hirsch: Well, um, pretty, uh, Pretty powerful.
Thank you again for sharing my recollection. And I think it was from the movie that you made about Lucas and make his disease was that there was, um, a stone, I think it was from your grandmother when she passed away. Right. And I’m wondering if you could relate that story. Right?
Dan DeFabio: My mom’s mom died in February after Lucas had been born in December.
So. It was the first big family gathering and the first chance for so many people can meet Lucas. And we didn’t know there was anything to be diagnosed about Lucas at that point, but in the ceremony for my grandmother, each cousin, each family member was given a little small bag with a ribbon on it. And in the bag was a stone and on the stone was engraved a word like trust, believe, love cherish, you know, those things.
And, um, so it was a bittersweet day, of course, you know, and it was like the circle of life, you know, here’s, here’s a new grandchild being born and here’s the grandparent passing and I didn’t open my commemorative bag. And then, um, months later, uh, almost a year later when we were doing the copper shots.
We would alternate where they were given for Lucas. So left buttock, right. Buttock, then left thigh, right thigh, and then repeat the process. So I felt I needed a little sharp to remind myself where I was and a marker to move on that chart and say, Oh, I’ll get that stone. I’ll get that stone. I got from my grandmother.
And it’s my first time reading the stone and the stone that I got says hope well, and it just broke my heart because. It was so appropriate and it was, you know, perhaps my grandmother looking down and guiding us, or yes.
David Hirsch: Yeah. Well, I was really touched by it. Thank you for relating. And there was a quote that you included at the end of the movie, which I thought was like, I don’t know where you found it, but it summarize the whole thing.
And it’s by Dr. Martin Luther King jr. Out of the mountain of despair, a stone of hope.
Dan DeFabio: Yeah. You know, February is black history month in February, includes rare disease day. And I, as I’ve become a voice of rare disease, I always feel a bit guilty that I’m distracting from what should be black history month by shouting out my rare disease stories.
But that was when I was finishing the film. So black history month was on my mind and the stone of hope was on my mind. And the dr. Martin Luther King, jr. Quote, again, just spoke to me and said, you know, I feel like we are in a mountain of despair and what can we do when, when we first received the diagnosis, I thought, I don’t know how we can ever.
Be happy again, but after a tough period of adjusting expectations, I can honestly say now that he brings us so much joy, so much more joy than, than pain
Until there is a cure raising awareness and encouraging early detection offer the best hope.
David Hirsch: So what was it like seven weeks ago that led to Lucas’s passing?
Dan DeFabio: Most boys would make his dive pneumonia. They have twisted blood vessels. And as we learned more about COVID-19. Those are key vulnerabilities. You might get Monya, you might have breathing complications. And now we know there’s blood vessel compromise.
And if you have preexisting conditions along those lines, you’re, you’re in rough shape. So when people began to shut down, actually a few days before our local schools shut down and my wife is a teacher at the high school. We made the decision. Lucas would not be going to school. And then a couple of days later, we said, and actually Alex is not going to school.
And then actually the next school day, they made the decision. Like New York state schools are closed. So yeah, we were only ahead of it by a few days, but our lockdown was probably tighter, more severe than most people’s because we were worried about Lucas. I went out for groceries and that was it. And nobody else did.
But Lucas had been since December, he had been hospitalized in December because of kidney issues. His kidneys had for years been bad, but they were getting much worse. And the urologist said to us before pandemic issues, there’s not very much, we can do the things we can do. You’re going to be looking at months, not years.
So we knew the clock was ticking, but when you hear months, not years, maybe the optimist in me thinks, are we talking nine months? How many months? Right. This isn’t in two months, this is some number of months. Well then in the midst of pandemic, he, Lucas got kind of critical with his kidney issues. Again.
And through one round of that, we just weathered the storm and sort of recovered and recuperated enough. And then it hit again in may. And basically we’re trying to avoid going to the hospital because of COVID-19. And we reached the point. We said it has to be done. He has to be in the hospital. What we would normally do is my wife would spend a night in the hospital and then we’d switch out and I’d spend the night and back and forth alternating.
So neither one of us would be too overwhelmed. And each of us would be able to continue to work. But in this situation, I said, why, why expose more of us to the hospital environment than we need? So I’ll go and I’ll do it all. You stay home. Okay. And Lucas spent six days in hospital and he had six procedures and he doesn’t recover well from any, I mean, in a way he he’s a trooper.
He does recover well, but his recovery is take longer. And so, you know, ultimately, yeah, I don’t think really anyone did anything wrong, but some of those procedures didn’t work out well, didn’t accomplish what they were supposed to. That’s why there were so many of them, they were basically retrying things and.
It, it took a toll that said he seem to recover well on, um, June 4th, we got to the point, it’s always a struggle to get out of the hospital with a kid like Lucas. They, they, his baselines aren’t that great. So they always have a reason to keep them in and we tend to argue, no, no, no. We’re good enough. You should let us go.
And this stretch of hospitalization was no different doctors eventually came around and said, okay, It’s looking like your son is stable and could go home unless you want to. No, I don’t want to stay another day. And they, I kind of laughed and let me have my way. And I actually heard them making their rounds to like the next group of doctors and saying, okay.
And then the dad said, no, I’m not staying another day. You try.
And, you know, I’m. I don’t second guess that decision, because it meant that Lucas got home to see Tina and Alex for the first time in six days. And we had a nice, what is for us normal night sitting together on the couch. And we got that smile I told you about, and that means everything.
And when you know, the end is going to come and we didn’t know, I don’t mean to say that we knew it was coming the next day, but we knew in months it was coming. You start to wish for certain ways, what’s the best way this can happen. Does he die in his sleep? And we don’t even know about it. And we see it the next morning and it’s too late.
And I maybe had in mind that that was the best way for me. Not necessarily for him who knows what the struggle would have been like in the night for him. And what happened instead was we had our nice family night together, Thursday and Friday morning, we got them out of bed. And started to do the normal things of, you know, putting him into his wheelchair and giving him water.
And he, he just started to fail. He, it was quick. It was, it wasn’t scary for him, which is fantastic. Um, it was, I think too quick to be painful, relatively painless, I’d say. And really in the time of span of time, that took to. Call nine one one, you get the ambulance here. He was gone and we were able to call my sister and my parents, and they were able to come now what they weren’t seeing him alive, but they were, this was their last chance to see him.
And yeah, and, and that’s what broke corn chain for us, you know, until then we hadn’t seen my family and they hadn’t seen us and we hadn’t seen neighbors. And now all of a sudden there’s. Five or six paramedics in our house and a police officer. And it felt like, yeah, quarantine is the least of our concerns at this point, but.
David Hirsch: Well, thank you for sharing. It’s a very, very powerful story and it’s so vivid and fresh and, um, I think it speaks to your character. Tina’s character. The way your family does things. And, um, I just want to say thank you for sharing.
So I’m thinking about supporting organizations that your family has relied on either for Lucas directly or. For your family’s benefit. And you’ve mentioned, um, a couple of them, the Menkes foundation. So we’ll naturally include that contact information in the show notes. And I think you mentioned the every life foundation, but there were some other organizations that, uh, I know that you mentioned in past conversations, and I’m wondering if you could just take them off.
Dan DeFabio: Yeah. The first was the Ronald McDonald house, which I knew existed, but I didn’t, I quite know how helpful it could be. And so Lucas was born December 21st, so you’re headed right into Christmas and then they say, you’re going to spend 10 days in the hospital. And it’s only about 40 minutes for us to drive home to the hospital.
But when you need to be near your child, you don’t want to be 40 minutes away from your child. And the Ronald McDonald house took us in and we spent Christmas there and I would have predicted that that would be a depressing place to spend your Christmas. And instead it was so inspiring and uplifting and really made it warm and wonderful as much as it could be facing what we’re facing and that’s their goal.
They want to take. You know, we can’t fix your medical situation, we’re going to fix your comfort situation. And I, my wife, nor I had ever needed, or wanted any kind of charity prior to that, but all of a sudden we realized we need it. We are those people that need this kind of help. And we’re so grateful for it.
So definitely that is one organization. We, we stand by to this day and then as we got a little. Into our Lucas’s development. There was, um, the visiting home nurses association that was helpful around here in Saratoga County. It’s called early intervention. There’s a, there’s a great yeah. Program for kids like Lucas, where if they need PT or OT or speech and turns out he needed all of those.
And they all came into our home. And then eventually we got into a program for home nursing and we had a fantastic nurse for eight years. And in fact, as we look. At that time span, that was Alex age one, two to the present. So his entire life, he thought of our family, not as a family of four, but a family of five because Sandy, the nurse was always in our house.
Now. She was there not living in the house. She was there about 40 hours a week, which is substantial. So Alex actually made the point a couple of days after Lucas’s death. And it was one of his first kind of breaking down crying moments. And he said, We didn’t just go from a family of four to a family of three.
We went from a family of five to a family of three. And he’s right about that. Uh, so the all that kind of nursing support was tremendously helpful. And I’ve also been grateful to be in New York state, which has, you know, you can complain certain States have higher taxes and whatever, but generally, if you have the higher taxes, you have higher available services.
So things that were covered for us, I’ve seen families in the Mankey support group complain. They can’t get an aid for their kid, or they can’t get. And adaptive piece of equipment. And we generally could, you know, sometimes you have to jump through horrible hoops to make it happen, but eventually Lucas was on Medicaid.
And I think without that, we would have been bankrupted by this another group early on when Lucas was old enough to go to preschool, it was through center for disabilities. They had a preschool available that uses what they call them move program and move stands for mobility opportunities via education.
And that was fantastic. And those people are just so dedicated. And so kind in fact, I know we’re only doing audio, not video. No, but this was drawn by one of his preschool teachers. It’s a dr. Seuss cat in the hat. It’s so beautifully drawn. It’s laminated. So I’m able to still have it all these years later.
And that was just given to Lucas, maybe on his birthday, maybe it wasn’t even a special occasion, but that just meant so much just all kinds of things like that.
David Hirsch: so I’d like to switch gears and, um, think beyond your own family situation and talk about, um, this organization that you and Bo Bigelow have started called disorder. The rare disease film festival. What’s the backstory on creating a film festival. And how did that all transpire?
Dan DeFabio: Yeah. Um, part of it is my background in film and I had done a, a different film festival prior, so it wasn’t entirely new to me, but when I made the film about my son, yeah.
In 2015, I tried to get shown wherever I could. And eventually I kind of ran out of places. I felt if you know the film festival circuit, they want you when you’re new and they don’t want you after a year or two. And, uh, I, I didn’t want to accept the answer that. It’s run its course you’ve shown the scone to all the people it’s going to be shown to.
And then I met Bo at a global Jean’s conference in 2015 and we had both had so much in common. And one thing was, we had written blog posts and then he mentioned he had made films. And I said, wow, we really have a lot in common. And so when my film played a festival near him in Portland, Maine, he came and supported and we talked a bit and I told them how.
It seemed there weren’t good options for films. And I said, he should be making a film about his daughter too. And I said, but when you do, you may find there’s not great options for where to show it. And, you know, medical conferences were a good option to an extent, but film festivals were another. And could we maybe combine the best of both of those?
Could we get the targeted audience that really cares about rare disease? Not just the general purpose audience. That comes to a film festival. Could we not just curate the films? So they’re all about rare disease, but could we curate the audience? So it’s all people that are stakeholders, whether they are patients, advocates, researchers, physicians, clinicians.
And so Beau will tell you he was somewhat reluctant, but eventually he said yes, and we set out to do it. And we had no idea if it was. Just a need we felt, or if it was actually going to be met with a, you know, a popular response that could support it, meaning would enough people show up to fill the seats?
Would enough people sponsor the event? Would enough people even send us films? And one by one, we were surprised by while there’s a lot of films coming our way while there’s a lot of interest from sponsors, not by the way for anyone to be sponsored. Number one. Cause every, nobody wants to go first in that world.
Right. But once there was sponsor number one, I’m forever grateful to premier research for being number one. Once somebody else jumped in, I can’t say it was easy, but it, the doors were open. People were willing and able and looking. It seems, we knew we never knew people were looking for something like this.
And the same with the audience. We sold out most of our screenings. And what we hear back from people is. We needed this, we needed this opportunity and what Bo and I want most to happen and does happen is you don’t just show up and watch the films. You have to talk to the other people that you’re sitting with.
And that point of information that came from the film, hopefully that starts a conversation you never would have had otherwise. And maybe you’re focused on Duchenne muscular dystrophy and the person next to you is focused on sin gap MUN, and you suddenly realize. Oh, the researchers that we’re dealing with should be talking to the researchers you’re dealing with because I see some similarities that nobody’s really exploited before.
So that was our big picture goal. And we were very glad that that kind of stuff has happened.
David Hirsch: Yeah, very powerful. And, uh, from what I remember, it started out in Boston. The first of the film festivals was knocked over of 2017. And then you. Took about two years. And you put on another film festival last year now, which would have been in San Francisco in November of 2019.
And then you had these grand plans to not wait two years, but to do something here this past summer spring in New York city, unfortunately COVID-19 disrupted a lot of plans, including your own. And I’m wondering when you reflect on what’s transpired, obviously it’s. Sad or bad that you haven’t been able to put on the third disorder, the rear film festival as you had planned, but, uh, some other things have come up as a result.
Dan DeFabio: Yeah. You know, in hindsight, looking at an event like ours in New York city in the middle of may, which is when we were scheduled, that was the worst place, the worst time and the worst community, the vulnerable, rare disease community to try to get an event like that. So of course we postponed and then as we postponed, we thought, well, maybe it’ll happen in November.
And now I’m talking to you in July and we’re looking at November as not possible either. So when that happened, Bo and I. Well ma many film festivals have gone virtual, and we talked about that and we talked about why it didn’t do what we wanted it to do. And instead we built. A streaming channel, it’s called the disorder channel.
And if you have a Roku device or an Amazon fire device, you can just search channels and add us, like you would add Netflix or HBO or anything. And also we’ve discovered that if you search the titles of any of our films, like my film is monkeys disease, finding help and hope. If you just enter that into search up comes our channel and here’s how to play it.
And it’s convenient. So. In some ways that was a born of necessity. We can’t do the festival. We’ll do this instead. But as we got into it, we realized the ways that it’s better, you know, we could only add so many films to a festival and it was very tough sometimes heartbreaking to tell someone you’re amazing.
Yeah. The film about your child, we’re not going to accept it. And sometimes the considerations there were. You made a film about Batten disease and we have three of them already and you know, that’s not their fault. Their story’s no less valid. And now in the channel, let’s have six stories about Batten disease.
Why not put them all in there? You know, again, just as we would for the festival we do for the channel. If the quality is there, we want good films. We want well-produced material, but. We don’t have a maximum capacity anymore. And along those lines, we tended to not show too many long films in the festival because you only have so many hours in the day, but on a TV channel, we now want the longer films.
And so we’ve actually gone back to somebody who had both a 15 minute and a 65 minute. And we said, you know, for the festival, we wanted your short film, but for the channel, we want a long film. And so that’s felt really good that we can get into more depth with some of these stories.
David Hirsch: Yeah, well it’s, um, sometimes it’s like a blessing, right.
You know, like we talked about earlier, one door closes, another door opens and, uh, yeah, like you said, there’s some benefits. You’re not going to be limited by the number of films that you would at a film festival. And the length of the film can be much longer and the audience, right. Isn’t limited to people that are just going to be in one physical place, but.
These films can be viewed by anybody, anywhere in the world. Right. At any time they want to look at them. So the message is getting out to a much wider audience. So, you know, who’s to say where this is going to go, which. Sort of begs the question. We should put a date on the calendar a year or a couple of years down the road and let’s do another interview and we’ll look back on all this and say, you know, who would have guessed right when we were in the midst of, or just seeming like in the midst of what a 2020 was all about with a COVID in the pandemic that all of these things would have transpired.
You can’t connect the dots, looking forward. You can only connect the dots, looking backwards. So let’s also talk about, um, global genes, which I know is, uh, or an organization that, uh, you have been affiliated with as well.
Dan DeFabio: Yeah. And I often say that, um, it put me on the path, you know, I, I didn’t know what being a rare advocate was.
I had written a piece, the one I referred to about changing your expectations and. I heard about global genes and I entered that piece into a contest they had, and it won their 2015 rare patient story award. And that was some validation, you know, I thought, okay, maybe even among the voices of rare disease, maybe I have something to say, then they had their conference coming up.
They encouraged me to attend. And I thought, yeah, this is, this is where I need to be. And I learned. A ton and just, uh, the relationships I formed there certainly of course, meeting Bo Piccolo and where that all led to, but there’s a lot of other people. For example, the writing I had done, some of it was on the mighty and I never met in person, the founder, Mike Porath of the mighty until I went to global genes.
And certainly Nicole Boyce, who’s a. Powerhouse in this space who at the time was running global genes and founded it. But so many others carry Austria, you know, so many great advocates. That’s where they all coalesce. And you know, there’s something I talk about how much bill and I have in common. And there is a great number of things, but.
It’s weird to think. Just five years ago, 2015. Of course we had the mighty in common. Of course we had global genes in common. Of course we had Nord in common because at the time, just five years ago, those were sort of the only ways you could go with rare disease advocacy. Now there’s a lot of other opportunities and we are one of them.
We are creating some of them, but. Yeah, the space was kind of smaller back then. And so you bumped into more of the same people you still do. It’s a small community. You still bump into all the same people. And if you don’t know them, you’re one degree separated from them.
David Hirsch: So, yeah. Well it speaks to being intentional and not just thinking about things like we talked about earlier, but erring on the side of just doing something.
So again, thanks for sharing Daniel. So I’m sort of curious to know why is it that you’ve agreed to be a mentor father as part of the Special Fathers Network?
Dan DeFabio: I know how tough it is on the, as I said, the closer to diagnosis day, the probably the worst mental state you’re going to be in. And that’s often somewhere near that period of time is when people are seeking, they’re seeking answers.
They’re seeking people that have been through it. And it took me a while to even joining the monkeys, Facebook group, you know, most online groups. I think you, you have a, um, cultural sensitivity that I’m the newbie. I shouldn’t speak very much. And I was a member of that for years before occurred to me.
These are children don’t live very long. I’ve got five years experience. That’s a lot of experience. I’m not the newbie anymore. I can actually give advice and people can take it or leave it. It might not be good advice. I don’t know.
David Hirsch: Yeah. Well, thanks for sharing. We’re thrilled to have you as part of the network, let’s give a special shout out to our mutual friend, Bo Bigelow, a Special Fathers Network podcast number 51 for helping connect us.
Dan DeFabio: Yeah.
David Hirsch: If somebody wants to learn more about Menkes disease, disorder, the rare disease film festival, or your work at the DeFabio Design or to come, what would be the best way to go about doing that?
Dan DeFabio: Oh, boy, we’d probably have to have five or six different websites for all that stuff. But themenkesfoundation.org is a great place and that actually has my movie on it.
And you could try to track me down through that. You can also go to defabiodesign.com for my sort of professional endeavors and the disordercollection.com for the new TV channel.
David Hirsch: Okay. We’ll make sure that we include all those things in the show notes. So it’ll make it as easy as possible for people to seek out the resources that we mentioned as well as the context.
Daniel, thank you for taking the time in many insights. As a reminder, Daniel is just one of the dads who is part of the Special Fathers Network, a mentoring program for fathers raising a child with special needs. If you’d like to be a mentor father or are seeking advice from a veteran father with a similar situation to your own. Please go to 21stcenturydads.org.
Thank you for listening to the latest episode of the Special Fathers Network Dad to Dad podcast. I hope you enjoyed the conversation as much as I did.
As you probably know, the 21st Century Dads foundation is a 501 c3, not for profit organization, which means we need your help to keep our content free. To all concerned, please consider making a tax deductible donation. I would really appreciate your support.
Daniel. Thanks again.
Dan DeFabio: Thank you, David.
Tom Couch: And thank you you for listening to the Dad to Dad podcast presented by the Special Fathers Network. 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 fathers to support fathers go to 21stcenturydads.org. That’s 21stcenturydads.org.
David Hirsch: And if you’re a dad looking for help, or we’d like to offer help, we would be honored to have you join our closed Facebook group. Please go to facebook.com groups and search Dad to Dad.
Also, please be sure to register for the Special Fathers Network, biweekly Zoom calls held on the first and third Tuesdays of every month. Lastly, we’re always looking to share interesting stories. If you’d like to share yours the story or know of a compelling story, please send an email to David@21stcenturydads.org.
Tom Couch: If you enjoyed this podcast, please be sure to subscribe on iTunes or wherever you listen. But Dad to Dad podcast was produced by Couch Audio for the Special Fathers Network. Thanks again to Rubin Law for supporting the Dad to Dad podcast. Call Rubin Law at 847-279-7999 and mentioned the Special Fathers Network for a free consultation.