On this Dad to Dad podcast host David Hirsch talks to Shane Lee, a systems administrator and a father of five, including Jocelyn, who sadly passed away at age 4 ½ from complications related to Spinal Muscular Atrophy. We’ll hear the amazing story of the Lee family and their travails and triumphs over SMA on this Dad to Dad Podcast, presented by the Special Fathers Network.
Dad to Dad 64 – Shane Lee, father of 5 children, 3 diagnosed with SMA including Jocelyn, who sadly passed away at age 4 1/2
Shane Lee: She changed, not only our life, but she changed our family’s lives. And it was something that affected everyone. She had an impact that changed their lives. Not only then, but forever. And I have testimonies of friends and family that have come to faith in Christ. Because of Joslin.
David Hirsch: Wow.
Shane Lee: That’s shamefully, a systems administrator, and a father of five, including Joscelyn who sadly passed away at age four and a half from complications related to spinal muscular atrophy.
Tom Couch: We’ll hear the amazing story of the Lee family and their travails and triumphs over SMA that’s all on this 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. As David Hirsch talks to special father Shane Lee,
David Hirsch: I’m thrilled to be talking today with my friend, Shane Lee of Louisburg, North Carolina.
A father of five and a systems administrator for an energy company. Shane, thank you for taking the time to do a podcast interview for the Special Fathers Network.
Shane Lee: Oh, thank you guys. I appreciate it.
David Hirsch: You and your wife, I’ve been married for almost 14 years and are the proud parents of five children. Trey who’s eight Nathan six, Asher for Kira two and Jocelyn who was born in 2007 and sadly died at age four and a half from complications related to SMA type one.
Let’s start with some background. Where did you grow up? Tell me something about your family.
Shane Lee: Uh, that’s a long, crazy story, but I’m sure like most individuals, it is, it takes turns here and there. So I was born in Sanford, North Carolina. My dad was in the Navy prior to my birth Vietnam war and all the wonderful things that come along with that.
My mom and dad got divorced when I was, I think I was about five, five and a half somewhere around there. And my mom and I moved to Maryland. Where I basically grew up. I didn’t leave Maryland until I was about 26 or so. Not actually, not until I met my wife and got married. Did we leave Maryland and come to North Carolina?
And we’ve been here for 13 years now. Okay. But basically, yeah, I grew up in Maryland. Typical middle class, suburban area. My mom Deserae Mary. Uh, she’s still married to, uh, her husband now. I think they’ve been married for while it’s probably been 25 or so years, but along with that, you know, we had a mixed family.
So I had, uh, three step sisters and a stepbrother. My, I do have myself, one brother and two sisters. But they stayed and lived in North Carolina as my mom and I went to Maryland and, uh, basically grew up there, went to high school. There went through my first attempt at college. I like to call it. It was one of those immature, you know, young and crazy went to school for the wrong reasons for the parties and for the girls.
Once I got my act together, you know, thank you Lord. I did attend, uh, Liberty university. And that’s where I, uh, majored in management information systems with minors and business, Christian counseling and church ministry. My wife, Jennifer Lee was a, uh, elementary school teacher for about 12 years. She left the profession or left teaching once Jocelyn was diagnosed with SMA, um, has been a stay at home mom since.
David Hirsch: Okay. Well, it sounds like it has been a journey. Thank you for sharing. And I want to go back a little bit to your growing up. Your parents got divorced at an early age, your mom remarried, and you’ve got some step siblings. It sounds like in the process. And, um, did you maintain a relationship with your biological dad?
Shane Lee: Oh, absolutely. Yeah. He moved around a lot. Uh, once he got out of the Navy, he went back to school and actually got his master’s degree in business. So he had an MBA from Georgia state university and Atlanta, Georgia. He was an entrepreneur. He was a, you know, extremely smart guy, started three different businesses with that process moved around a lot.
He lived in Maine, he lived in Georgia, South Carolina and North Carolina, Florida. So he was kinda all over the place, but once the, uh, kind of settled down, it was in Myrtle beach, South Carolina. So I got to spend, uh, a lot of summers at the beach, which. It was something I fell in love with. We had a lot of special moments travel to the beach and to the mountains.
It was always when I visited him, it was, you know, we spent time together. Yeah. They’re just him and I, and we would go somewhere and do something. It wasn’t, you know, sit in the house. Well, he went to work or stayed at daycare while he went to work or nothing like that. He made sure that he took the time off of work.
That when we were together, we were together. And, you know, I have a lot of wonderful memories of, uh, places we visited and things we did.
David Hirsch: Excellent. So is your dad still alive?
Shane Lee: Oh, unfortunately my dad had a couple of different things, um, through the Vietnam war, you know, there’s a lot of veterans will tell you they were exposed to a lot of chemicals and things.
Um, he was actually a Naval intelligence officer on the USS forestall. Um, I don’t know if you know anything about Naval history, but the USS Forrestal actually had, uh, Senator John McCain. Omar was a fighter pilot. On a forestall. Okay. Plane that he was piloting was on the flight deck and a munition accidentally fell from the plane and exploded.
And the entire flight deck of the forest all caught on fire killed a couple of hundred people. Erotically enough. It’s the training video that the U S Navy uses today. Wow. To train them our sailors on how to fight fires. On a aircraft carrier.
David Hirsch: Well, that is a little bit more Naval history than I would have expected.
Shane Lee: Well, we come from a line of, uh, of military with the last name. Lee, you can imagine it does go all the way back to Robert E. Lee. Oh, wow. But yeah, my dad actually passed away of cancer has been for four and a half years ago now.
David Hirsch: Okay. Well, I’m sorry that he passed. No, uh, it sounds like, uh, he played a very important role in your life.
And I’m wondering if there’s any, I don’t know, lessons that you learned or important takeaways that come to mind when you think about your dad?
Shane Lee: Oh, absolutely. He was the one that taught me. To work hard and to stay at it and everything doesn’t just get handed to you. Although I will admit he did spoil me.
It was, it was still, you know, a word hard stay focused kind of mentality, but he did teach me. You also have to enjoy life. You have to take time to enjoy the things God’s given us and family and, and. Seeing what God’s creation through traveling and doing different things was, was definitely the lesson that I took away.
But also, you know, later in his life, uh, as, as. He progressed through multiple battles with cancer. Yeah, no, I saw an amazing transformation and amazing testimony of how deep his faith was and how God shaped him into a better person. Cause you know, like I told you earlier, he was entrepreneur started a couple businesses and traveled a lot and that did take.
A lot of time away from family, a lot of time away from me and, you know, he wasn’t there and I’m not blaming him, but just being honest, he wasn’t there for a lot of the events that happen in a normal life, such as learning how to drive and, you know, going to your first prom and your first girlfriend and you know, your first job and just how to navigate all that.
You know, he was there. On the phone, you know, here and there when I really needed to talk to him, but it would have been a whole lot different to have his, his presence there. And as, as we grew older, as he grew older and I saw a transformation and I always liked to tell people, um, ironically enough, I did his eulogy at his, uh, funeral and his eulogy used the book of job to kind of describe his life.
So in the story of Joe, he slowly but surely starts losing things. All of his children are taken from him. His possessions are taken from him, his money, his livelihood, his marriage, everything is kind of turned upside down and he, he refuses to curse God. And the book you’ll read that is even as wife turns to him and says, why don’t you just curse God and die?
You know, basically giving up. Yeah, there’s that? There’s no real God. There’s nothing that he’s going to do. You might as well just roll over and die. And I saw in my dad, you know, as the businesses started to dwindle, the money started to dwindle. So, you know, the nice house and our cars, you know, these things slowly got taken away from him piece by piece.
Crazy enough. My half sister through my dad. She has three children. One of her little girls was born with a rare disease, not SMA. It was something completely different. And I’m actually lost her little girl or my niece at the age of 11. Oh, wow. So you can imagine my dad having five grandchildren and seeing two of them buried.
So not only has. His livelihood, his money, his homes, all these things been taken away. But now he’s watching his children suffer because grandchildren are being taken away. And then to top it all off, he has three different bouts with three different kinds of cancer. Now to a normal person, whatever that is nowadays, you would few a think, you know, going through all of that, you would essentially do what job’s wife said, you know, curse God and die, give up, you know, this is all it’s going to be.
And you’re kind of for lack of better term, you’re your Sol. But what I saw in my dad was someone that refused to give up the, his faith grew stronger. That, you know, the, the material things didn’t change him. That didn’t take away from his joy, from his happiness. As he progressed in his disease, he got stronger in his faith and you could see it in his eyes.
You can see it in the way he talked. You could see it in his demeanor, the man ministered, a wedding for someone on a beach and Myrtle beach. And the entire time he was on chemo, like he could barely stand up, but you wouldn’t know it to see him and to watch him and to listen to them. I took a lot from that.
I took a lot from he’s the one that really showed me, you know, what faith can do. Yeah. Well,
David Hirsch: that’s an amazing story. I, with what little you’ve shared with me, very powerful. Um, thank you again for sharing. I’m sort of wondering if there. Were any other father figures? Did your grandfather’s play a role? Uh, when you were growing up?
Shane Lee: I never got to meet my mom’s parents. I think my grandmother passed away before I was born and my grandfather passed away shortly after I was born. So I don’t remember that time. Okay. Um, as for my dad’s parents, yes. I grew up around them. My grandfather was a world war II veteran, and that’s another amazing story.
He was, uh, in the army North Africa, his platoon was ambushed. He was the lone survivor of the ambush actually played dead until the German army. Left and for the next, I think it was four or five weeks wandered through the deserts of North Africa and totally could find help and literally kept himself alive by drinking the water out of the tank, treads that it had left as they traveled through the desert.
Once he received help. Came back to the States and had a very bad case of back. Then they call it shell shock. But now we call it PTSD to the point where you had to spend some time and yeah. In a hospital or get, get help with it. And I can remember still, you know, as he grew up or he had to physically you sleep in a different bed as my grandmother, because he would have these.
A night terrors where he would violently act out in his sleep. So he had this literally sleeping in separate beds, but another, another strong testimony is him, even though he went through all of that. Now he, he’s probably one of the ones that planted the seeds of faith in my mind and in my dad’s mind.
And my grandfather and my grandmother both grew up in the church. My grandmother was a. A Sunday school teacher for 30 years, my grandfather played the organ and was a deacon in church for probably just as long. And it was just a very strong, uh, testimony both of their lives, but they weren’t the over the head with the Bible, you know, the hell and brimstone kind.
They were the, they were more of what you read about who Jesus really is. You know, they loved you where you were at. They helped you along your way and whenever possible they encourage you through God’s word.
David Hirsch: Yeah. What a great legacy. Thank you again for sharing. Um, and it sounds like you’re passing that along as well.
And I think of it as a. Uh, actions speak louder than words, right? It’s the role model. It’s the testimony, as opposed to telling you what to do and how to do it, they live their faith. That’s admirable. It seems like it’s happening less and less these days.
Shane Lee: Unfortunately,
David Hirsch: So let’s switch gears and talk about special needs, uh, first on a personal level and then beyond. So before Jocelyn’s birth, did you or Jennifer have any connection to the special needs community?
Shane Lee: Uh, no, honestly, none. The only, only other. Tommy that came across. It was that disease I was describing with my niece when she passed away.
And that was more of a, um, forgive me. I’d only remembered the name of it, but it was a issue with how the body metabolizes iron, and it would actually, um, deposit. Iron on the brain and thus killing off sections of the brain, your motor movements. So that eventually is what took her life. But beyond that, no, we had no interaction with any special needs or anything like that.
Never even heard of SMA until Jocelyn.
David Hirsch: Okay. So SMA stands for spinal muscular atrophy. And as I understand it, it’s a genetic disease and it’s passed down, right. It can be inherited and, uh, something to do with proteins, um, not, uh, allowing the neurons to fire and then the neurons die off, uh, result in the loss of muscle control except for the heart.
And there’s no treatment or medication, which sounds frightening. Who does it affect overall? And. Um, how has it impacted your
Shane Lee: family? Uh, who does it affect? I mean, it’s like I tell anyone wants to listen. It affects everyone that doesn’t discriminate. So a better way to put it, you know, male, female, black, white, yellow, Brown, green, purple.
That does not discriminate, but it affects everyone whether you have it or not. If you’re associated with it. It affects you if you have it, of course it affects you, but there’s a bigger ripple effect is a better way of putting it.
David Hirsch: Okay. Well, Jocelyn is your oldest and she was born in 2007. And how did that diagnosis?
Shane Lee: Oh, okay. So yeah, you know, for, we get married in 2005. No, spend a little time getting our lives together, moved to North Carolina and, uh, you know, start our careers, build his big, beautiful house, typical chasing the dream, so to speak both of us working. And then we find out that Jennifer’s pregnant.
Of course, we’re ecstatic about it. Our first child completely normal pregnancy, nothing abnormal, everything was beautiful. Everything was fine. You know, all the, um, Scans and testing done during pregnancy showed nothing at all. Development was perfect. All the sonograms came back fine, nothing abnormal. And she was born on, uh, April 22nd, 2007.
Perfectly fine. I mean, it was a beautiful moment and, and all our lives, she was just absolutely perfect. And you took her home and you know, your world changes, but in a good way, and now you just look forward to those things, those events of as they grow up and the things they’re going to do. And, you know, as a father, you start thinking about what gun you’re going to buy.
David Hirsch: you’re talking about keeping the boys away when she gets to be older.
Shane Lee: Right, right, right, right. But you know what, I’m
David Hirsch: with three daughters I’ve been there. Yeah,
Shane Lee: yeah. Yeah. So, you know, you go about your, your life, so to speak. And, um, as babies mature and grow, you know, doctors call them milestones, you know, we’re in, they’re starting to pick their heads up when they’re starting to roll over.
And when they’re able to sit up on their own and you know, all those wonderful things and Jocelyn wasn’t achieving those things. I mean, we did get to a point where she could sit up with us holding her head, but if you let her go, she would start to tumble bull and fall over. And it just wasn’t normal. So, you know, through a battery of tests, um, she was tested from the time she was four months old to her diagnosis at nine months old.
I mean, that’s how long it took to. And we went to, you know, if it had an O L G Y at the end of it, you know, we saw them all kinds of doctors and specialists and, you know, we’ve, we finally ended up at the university of North Carolina as children, hospital. Pediatric neurologist gave us the diagnosis of a spinal muscular atrophy.
And back then, It was literally, you know, I can remember to this day, we’re sitting at his desk and he slides a pamphlet across the table and he says, this is the diagnosis. Take your daughter home and love her. She may not live to be two years old. Oh my God. And he’s stood up and he walked out of the room and that was, that was it.
That was all there was to it. And we just kinda looked at each other and. You know, a gambit of emotions come over you and thoughts come over you. And you know, you just look at each other, you look at her and you’re just wondering, you know, who, what, when, where, why and how, you know, but that was just the beginning of our, um, I call it an amazing journey and, uh, she changed not only our life, but she changed.
Our family’s lives. Um, it was something that affected everyone, everyone. I came in contact with her and our family. They’ll tell you to this day that. She had an impact that changed our lives. Not only then, but forever. And I have testimonies of friends and family that have come to faith in Christ because of Joslin.
David Hirsch: Wow. That is
Shane Lee: amazing. And there’s you can’t, you can’t put that in words. I mean, that’s, if that doesn’t prove God’s existence, uh, I can’t tell you what does.
David Hirsch: Yeah, well, um, I was really sad to learn that she passed at such a early age, but it’s not lost on me that, uh, three of your five children were diagnosed with SMA as well.
Uh what’s Nathan’s situation.
Shane Lee: Oh, well, Trey was a year old when Jocelyn passed away. He was born a carrier, just like I’m a carrier. My wife’s a carrier. The way their genetics works is you have to have two carriers to have a child disaffected. And science tells us that, you know, for every child that we have, there’s a 25% chance that there’ll be affected by SMA.
Well, we’ve already proved science wrong. I mean, yeah, whatever. However you want to interpret it. Trey was born, uh, affected or not affected, I should say, but a carrier. Uh, he’s absolutely perfect. And he’s eight years old now. Okay. Nathan was born next. He is affected same diagnosis, same type of SMA, but, uh, he is seven years old now.
Okay, then we have Asher, our third boy. He is now four years old. He was born a carrier, but not affected. So he’s absolutely normal. And then we, yeah, we have our little girl Kira, that’s still one that kind of changes the story. She’s the, what we call our miracle baby. As we mentioned our, you mentioned earlier through your research that, you know, SMA at the time did not have any treatments, any medications, nothing to help it.
And it was kinda like a ALS for adults, you know, prolong it the best you can with different pieces of equipment. And, um, that’s really all you can do, but through God’s grace and mercy, um, through the people of. The foundation that you looked up at cure SMA. They had been funding multiple clinical trials with, uh, various different, uh, pharmaceutical companies.
And one are those clinical trials proved that it was stopping the progression of SMA. Wow. The amazing part is the FDA fast tracked the approval of what’s now called Spinraza. Three months before Kira was born and Cara was diagnosed at birth and was dosed with Spinraza at 11 days old. And she is now she’ll be three in March and she has not missed a single milestone.
She is running around a normal two year old. And all the doctors just look at her and they’re amazed this an absolute miracle that has happened. And ironically enough, Nathan has been also dosed with this Madison Spinraza and he has shown improvement. He has improved his motor function and his fingers and his hands.
He’s able to wiggle his toes. And if you put them in water, which he loves the bathtub or loves to pull, he can actually butterfly his legs. That’s just, it’s an amazing journey that we’ve we’ve been on.
David Hirsch: Well, it sounds like, uh, Kira is a, not only a miracle baby, but that’s been Raza. It’s a miracle drug.
Shane Lee: It is absolutely is one thing I’ll tell you is, you know, as a, as a father that goes through something like this, you know, at first, you know, having a strong faith, you pray every night for your child.
And that’s how it’s I started. We were, you know, we would pray for Jocelyn and we would pray for, for each one of our children. And then, you know, as your faith grows and as God starts working in your life and you start meeting other children and other families, and you see the bigger picture, your prayers start to change.
And instead of praying for our children, we started praying for families. We started praying for everyone that was affected by SMA. And the amazing part is the way God works or where he was, how he worked in this. It wasn’t a prayer answer just for us. It was a prayer answered for the entire SMA community.
David Hirsch: Well, I I’m sort of flabbergasted by it. Yeah, these are very rare. The stories that you hear, like you’ve just described where there’s a breakthrough and the FDA, you know, actually moves quickly as opposed to, you know, cautiously, you know, to impact people’s lives like that. I’m sort of curious to know, uh, was there any meaningful advice that you got early on maybe after Jocelyn’s diagnosis that really was useful looking back that was really instrumental for you and Jennifer.
Shane Lee: Oh, of course. I mean, you get a myriad of different pieces of advice. You meet a lot of people on, of course, going through something like that. A lot of people, their hearts open and I want to help and they want to, you know, try to fix things so to speak. So you get a lot of tidbits and nuggets here and there, things that I learned that we’ve learned is.
The bigger piece of what, what life really is. And you know, you can’t take it for granted. Tomorrow’s not guaranteed for anybody, whether you’re special needs or quote unquote normal, it’s not guaranteed for any
David Hirsch: well, one of the ideas that comes to mind, sorry to interrupt is that we’re literally every one of us human beings is a step or a heartbeat away from.
Being dramatically impacted or losing our lives. I mean, we just don’t think about that. And that’s what I heard you saying is don’t take things for granted.
Shane Lee: Oh, absolutely.
David Hirsch: Yeah. Well, um, we’re on the same page. Uh, there is no question about that, but looking back, I’m wondering what were some of the more important decisions that you made on Jocelyn’s behalf, your family’s behalf and trying to address the situation?
When the kids were younger,
Shane Lee: I mean, a couple of different things we did. Um, she was, uh, just like, Nathan is. She was unable to sit up. So children with SMA or type one, I should say type two are able to sit up with type one. They’re in, it looks like a very large stroller. So they’re laying flat, you know, 99% of the time.
Okay. So with that, you know, you have to adjust a few things such as the vehicle that you’re in. You have to get a handicap accessible vehicle. We had to get a ramp put on the, in front of our house. It had to have the bathroom five for, uh, the stroller to be able to roll into. You always have to have different pieces of equipment with you, such as a suction machine, such as a cough assist.
Um, both of them used the Nathan still uses a feeding pump or a feeding tube. You have to learn all these different pieces of equipment, but you also have to learn your child as it doesn’t always affect children in the same way. They might have the same symptoms so to speak, but it may affect them in a different way.
David Hirsch: Yeah. Well, it sounds like you’ve had to learn a lot. Um, you know, the learning curve, uh, I’m going to guess at first was quite steep and then. Once you’ve been there and done that it doesn’t seem as overwhelming. Would you agree with that or not?
Shane Lee: Oh yeah. I mean, I would say just like anything, you know, it’s kind of like the first day of school.
You don’t want to be there. You don’t want to do it. You’re only imagining all that you’re going to have to go through. But once the school year is over, you look back and you think, Oh, what was I, what was I complaining about? It really wasn’t that bad.
David Hirsch: Yep. Exactly. So I’m wondering what impact. Jocelyn Nathan and Kira situation has had on their siblings or the.
Water family. You were talking about that, that sort of ripple effect that things have in a family.
Shane Lee: I don’t know. Like I said, it’s, it’s changed lives. Um, I hope, and we really won’t know until the children grow older, but I hope being around, you know, special needs children is gonna open our eyes and open our hearts to understand that yeah, we might be different on the outside.
Know, people are affected with different diseases that cause different conditions or our may make people look, look different or sound different, or, you know, do things different. But on the inside, you know, the heart is it’s the same soul is the same. No, we were all created in the image of God know. Just because someone’s a different color or something, you know, it has a, a to Z, it’s not something that you shine is something that you, you embrace something that you, you love.
They’re still a human being. There’s still, you know, flesh and blood. There’s still a creation, you know? So, uh, I hope that that opens their eyes to, that makes them more sensitive to those things. And then in the community, around us, our family, our friends, neighbors, people that we run into in the streets.
You hear horror stories of, of families that they have a special needs child that never comes out of the house, or, you know, they don’t do anything. They stay at home all the time or the parents or someone, they have a disease and people kind of shun them or push away from them. But we try to make an example say with Nathan and we did it with Jocelyn.
Also, they go everywhere. They do everything we do. I mean, we, so Jocelyn she’s been on boats. She’s been on trains. She’s been to the mountains. She’s been to the beach. No, she got to do all of that stuff. The same thing with Nathan now we’ve taken him camping and we took him to Florida last weekend, you know, to the beach, you know, we’ve, we’ve taken him to the aquariums we’ve taken on to, um, I mean, you name it, ball games.
We’ve taken them to football games, baseball games, basketball games, you know, monster trucks. They’re still a, still a little boy that loves sports. That loves interaction that, you know, he wants to do everything that everybody else wants to do. He just needs help in doing it. So we try to make an example of, we might have to do it different.
But that doesn’t mean we can’t do it.
David Hirsch: Yeah. Well, Mike, we were talking about earlier, uh, the perseverance and tenacity that, uh, you’ve developed as a family and maybe inherited from, you know, the gene pool that you have. It was remarkable and a role model for so many other people, those that you might’ve come in contact with and know, and many that you’ll never know, it’s like that proverbial pebble in the water with the ripple effect going out, you know, well beyond what our conscious awareness would be.
I’d like to switch gears and talk about the cure SMA foundation, from what I understand. It leads the way to a world war, spinal, muscular atrophy, uh, the number one genetic cause of death, for instance, and they do a lot of, uh, funding. They have an annual conference. There’s a lot of research, like you said, that they’ve done.
And then there’s chapters, I think more than 30 chapters all over the country. What has your relationship been with the cure? SMA foundation
Shane Lee: and Kira SMA, they they’ve been awesome. I mean, they were there day one, once we got the diagnosis and we started doing our research to see what was available and get in touch with other parents, because, you know, you’re looking for information, you’re looking for what to do next and yeah, you can go ask doc curse, but you know, not to knock it doctors, but they’ve been taught something in medical school there they’re kind of book-smart, I’ll say.
Do you want to go to a true resource, go to a parent, go to a relative, go to someone that has lived that life day in and day out. And that’s where cure SMA came in. And it was founded by two mothers that had SMA children and their time, which was 25, 30 years ago. There was absolutely no. Research, there was no answers to their questions.
So they went out and found them. And this is foundation or this organization has grown. And they were there day one, they sent us a care package and in that care package for toys and equipment and, you know, bath chairs and different things that they knew that we were going to need with, with Joslin. Now we’ve grown a relationship with them.
My wife has actually been the Carolinas chapter president for cure SMA for a couple of years. And, you know, we’re involved with their yearly walking roles. Uh, we have a local walk role here in Raleigh that we, he had up and put together an attender. Uh, we were blessed enough to be able to attend two of their conferences.
One of them being a Epcot center and Disney world Jocelyn actually got to go to that one. And we got to attend another one in the DC area. We’ve been involved with these folks since day one and we stay in touch with them and we’ve asked them to use us as a resource with, uh, families in the area and the Carolinas area, or, you know, the Southeast area.
If there’s any families that you hear about. By all means, send them to us. We want to kind of love on them and show them and teach them that, you know, this doesn’t have to be a death sentence. You know, there is life after diagnosis and there are things that, that you can still do. You still have a life and you can still enjoy your children.
You don’t have to crawl under a rock or go in a closet and cry. I mean, there’s a time for that, but eventually you got to come out. Eventually you got to hold your head up and open your eyes and go out the front door and enter the world. And you know, who, who best to ask. And someone has been there and done that.
David Hirsch: Yeah, I love it. I love what they do. And, uh, from what I learned, you, weren’t just satisfied with doing something through SMA, but you actually took the initiative to create something called the Jocelyn Paige Lee foundation. What does that organization do?
Shane Lee: Um, I actually, and I can’t take the credit for that.
That was actually an idea of my brother-in-law. Okay. Uh, Jennifer’s brother. He has a heart of gold. His name is Derek. He actually came up with the idea of a foundation that was initially set up truthfully enough to assist us with, uh, medical costs. It was kind of a thing that, you know, family and friends would donate money to.
Yeah. Help us kind of through the process, medical bills and buying equipment and making modifications to the house and things like that to help us with those kinds of things. But we got our feet on the ground and yeah. Path going forward, you know, I started thinking, well, what about all the other families?
We’re taken care of. Let’s go take care of someone else. And this is slow going thing. I mean, truthfully, that foundations Linux in existence for about 10 years now, but it’s still just my wife and I and family that run it. So it’s. It’s not gone, but it’s not something that we’ve been able to put our whole heart into as of yet.
Um, hopefully as the children grow and, you know, and we have more time to ourselves that we’re able to focus on that. But for eight years in a row, we’ve put on a charity golf tournament. We, we try to do that every year around Jocelyn’s birthday, just to kind of remember her and to have any event in her honor.
And, uh, you know, Lord willing that will one day be my full time job is to expand on that foundation and to go, uh, as, as Jesus said, and Jerusalem, Judea, and all the corners of the earth, that’s what I want to do. That’s the point of the focus of the foundation? Actually, the foundation’s motto is that others may be blessed.
David Hirsch: Yeah, well, I’m so impressed with what you’ve been able to do. It’s not lost on me that your children are two to eight years old. If there’s four of them. And for most people, that’s, you know, between work and trying to raise your family, you know, that’s, that’s a big order and, uh, you’ve had to navigate some different waters, not better or worse, but more.
Some different challenges and I’m hoping there will be a day or sometime some bandwidth available to find. So you can pour some tender, loving care into the foundation and your daughter’s memory. 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 father’s network.
Shane Lee: Uh, I mean, when Ray told me who you guys were and what she did, it was one of those things where, you know, you, you like to be around like minded individuals. You want to have, um, some, uh, sphere of influence that you’re able to influence others, but they’re also able to influence you, whether that be. In a mentoring capacity or whether that be in a counseling capacity or just someone to listen.
It always have to have an answer for everything, but just someone to listen, someone has been there and done that it may not be the same disease. It may be something completely different, but it’s still a lot of the same hurdles that you face as a father, trying to be a husband. And be a father and to raise your children with integrity and with values and you know, not let life overwhelm you to where, you know, you take it out on your family, you know, as dads or the fixers.
Now, if something’s broken, we want to fix it. But unfortunately you can’t always fix it. You gotta lean on, on others. You gotta, you gotta have a, a family around you. You know, as you’ve seen and heard, you know, our, our foundation is, is God, that’s who we’ve leaned on. Part of this is, you know, God’s given me a platform you’ve given us a platform.
You know, there’s a lot of families and individuals out there to have, uh, turned away. I’ll say they have given up, but I want to go to them and say, you don’t have to give up. There is a God and he loves you. And though you may not see it right now. What you’re going through right now. You may not understand it right now, but I promise you if you’ll trust in God and you’ll, you’ll chase after him.
And you’ll ask him the hard questions and you’ll be patient with him. You’re going to turn around one day and you’re going to see those dots that you mentioned. You’re going to see them all connected. And you’re going to understand the who, what, when, where, why and how.
David Hirsch: Yeah. Well, thank you for being part of the network.
I know that this is something that, uh, will benefit others and I’m hoping there’ll be some mutual benefit for yourself as well. And let’s give a special shout out to our mutual friend, Ray Motz at the. Game-changing dad’s organization and Fernanda beach, Florida for helping put us together.
Shane Lee: Yeah, absolutely.
David Hirsch: There anything else you’d like to say before we wrap up?
Shane Lee: Oh man, I just want to thank you guys for the opportunity to do this. You know, I hope it opens other doors of opportunity to share and to grow by all means. If there’s someone that is struggling with something like this, that needs someone to talk to.
I’m here. I’d be glad to listen to them and when possible, give some positive input, but yeah, just, you know, thank you guys for what you do now. God bless you. And, and just hope that, uh, we can reach as many as possible.
David Hirsch: That’s fabulous. So if somebody wants to get information on the cure, SMA foundation, the Jocelyn Paige Lee foundation, or just to contact you, how would they go about doing that?
Shane Lee: A couple of different ways. Um, cure SMA is just a cure. sma.org. Okay. Very simple. The Jocelyn Paisley foundation is her entire name.org versus jocelypaigeleefoundation.org. And that website’s a little bit old or, or we’re looking to kind of update it a little bit. So it may change. We may be looking at changing that from Joslin pages, Lee foundation to JPLfoundation.org.
So it’s a little bit easier for people to remember. And then the other way to get contact with me is I’m not a Facebook guy. Uh, I never bought into it. I don’t, I really don’t care what you ate for dinner last night. So if you, if you want to look me up, I’m on LinkedIn. Shane T. Lee on LinkedIn Jocelyn page Lee foundation is actually on LinkedIn also.
David Hirsch: Okay. Fabulous. Shane, thank you for taking the time in many insights. As a reminder, Shane is just one of the dads who’s agreed to be a mentor father has 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 mentor father with a similar situation, your own, please go to 21stcenturydads.org.
There are a host of ways you can support the special father’s network you can post to review on iTunes. Share the podcast with friends as well as make a charitable donation. The 21st Century Dads Foundation, Shane, thanks again.
Shane Lee: Thank you and God bless.
Tom Couch: And thank 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 mentors. Father’s in a similar situation. It’s a great way for fathers to support fathers, go to 21stcenturydads.org.
David Hirsch: And if you’re a dad looking for help for 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.
Shane Lee: If you enjoyed this podcast, please be sure to like us on Facebook and subscribe on iTunes or wherever you listen.
The dad to dad podcast is produced by couch audio for the Special Fathers Network. Thanks for listening.