020 – Gene Andrasco Tells of Raising a Daughter With Alternating Hemiplegia a Rare Neurological Disorder.

Transcript:

Dad To Dad 20 – Gene Andrasco Tells of Raising a Daughter With Alternating Hemiplegia, a Rare Neurological Disorder.    

In this Special Fathers Network Podcast, we’ll hear how the Andrasco family has dealt with their daughter Kiley’s rare neurological disorder and how they’ve tried to help other people who have the same disorder. It’s all on this edition of the Special Fathers Network Podcast.

David Hirsch: Hi, I’m David Hirsch. This is the Special Fathers Network Podcast, stories of fathers helping fathers.

Tom Couch: And I’m Tom Couch. Meet Gene Andrasco.

Gene Andrasco: With special needs kids you have to get help, and you have to get it early. Alternating Hemiplegia Childhood is a very rare disorder. There are fewer than a thousand cases diagnosed worldwide.

Tom Couch: We’ll hear the family’s story, how they’ve dealt with Kiley’s rare neurological disorder, and how they’ve worked to try to help other people who have the same disorder and maybe even find a cure.

Gene Andrasco: Since 2010 we have funded over $2 million of research at a variety of institutions.

Tom Couch: That’s all on this edition of the Special Fathers Network podcast.

Gene Andrasco: We kind of joked about earlier, you’re a guy, you need help. You have to admit it early that you can’t do it all.

Tom Couch: So here’s David Hirsch’s conversation with special father Gene Andrasco.

David Hirsch: I’m thrilled to be talking today with my friend Gene Andrasco of Lake Zurich, Illinois, a father of two and vice president at The Marketing Store worldwide. Gene, thank you for taking the time to do a podcast  interview for the Special Fathers Network.

Gene Andrasco: Thank you, Dave, for taking the time to interview e.

David Hirsch: You and your wife Kelley have been married for 24 years and are the proud parents of Ryan, 18, and Kiley, who’s 17, who was diagnosed with Alternating Hemiplegia of Childhood, or AHC, which is an extremely rare neurological disorder.

So let’s start with some background. Tell me where you grew up. Tell me something about your family and siblings.

Gene Andrasco: I grew up on the south side of Chicago in Mount Greenwood neighborhood, and I am one of ten children.

David Hirsch: Ten? Where are you in the birth order?

Gene Andrasco:  Number nine. So I’m second youngest.

David Hirsch: Oh my gosh. So what’s the age range?

Gene Andrasco: 16 years. I grew up in a regular three-step ranch house, kind of stereotypical Chicago brick home. My parents made it work.

David Hirsch: All I can think of is a lot of chaos. Like the bathrooms, like do you have six sisters? There would be no chance to use the bathroom.

Gene Andrasco: Yeah. There was a lot of activity.

David Hirsch: So you come from a large family. What was that like, if you had to describe it?

Gene Andrasco: It was great, because there’s always somebody around. But sometimes it wasn’t good, because there was always somebody around. It’s hard to get a quiet moment, but it was good. We all pretty much got along. We had your normal tussles with brothers, and stuff like that.

But me being at the younger end, I got to look up to the older siblings, sometimes quietly see what they’re doing and getting in trouble for, and try to mold my own behavior as I grew up type of thing. But, it was good.

David Hirsch: Excellent. So how would you describe the relationship with your dad?

Gene Andrasco: It’s a good relationship with my dad. He was a very old fashioned, mostly Irish, a little bit German, no nonsense, little bit strict, Catholic father.

David Hirsch: So you have ten kids, you have to be strict.

Gene Andrasco: But no, we had a good relationship. He was a hardworking person. He worked for Ford for 38 years. But I think overall it’s a good relationship.

David Hirsch: Excellent. So looking back on your childhood, and then maybe subsequent, was there anything that your dad said or did that really resonated with you, as far as a lesson or lessons that he shared with you?

Gene Andrasco: Coming from a big family, we didn’t have a lot of money. He worked hard to provide for us. Any jobs that had to be done around the house we had to do ourselves. With all those people in a small house, it was always a drain had to be unplugged, plumbing work to be done, and painting and stuff like that. And I helped out and worked on a tough job, taking apart the thing, fixing it. I was doing decent in school, and he’d always say to me, “If you keep studying, you won’t have to do this for a living.” So that’s always resonated.

David Hirsch: Okay. So if you apply yourself intellectually, you’ll be able to do a white collar job, if you will, versus maybe a blue collar job. Nothing wrong with blue collar jobs.

Gene Andrasco: Because then when you get older, it’s a lot harder to climb under a sink. And he goes, “That’s why you’re doing it, and not me. Because it’s easier for you as a young guy.”

David Hirsch: Absolutely.

Gene Andrasco: That was something that I’ve always taken away from him.

David Hirsch: Anything else?

Gene Andrasco: The self discipline he had. He was just very orderly. I’m not as orderly as him, maybe. But that is something I took away as well.

David Hirsch: Well, you have seven fewer kids too.

Gene Andrasco: Eight fewer kids. I’ve got two—he had ten.

David Hirsch: Oh yeah, that’s right. I’m sorry.

Gene Andrasco: Yeah, I took that away too.

David Hirsch: So where did you go to school? High school. College.

Gene Andrasco: I went to Brother Rice High School. So I went to 12 years of Catholic school. We lived half a block from Queen of Martyrs Grammar School. I’d walk to school, and then less than a mile from Brother Rice High School. Then I went to University of Illinois in Champaign. I was the first one in my family to go away for college, and college is always, we had to go in town, but my parents could not afford it.

I did well, and I wanted to get into accounting, and U of I had a great accounting school. I applied for the Chick Evans scholarship when I was in high school. And I did not get it the first application. Interestingly, it wasn’t because I had financial need. My father was very old fashioned, and he did not have any debt. He didn’t have any credit cards, nothing. So if he didn’t have money in his pocket, we didn’t buy it. That works great from a day to day perspective. But when I applied for a scholarship, I found out I’ve got plenty of assets, you have a house.

David Hirsch: So it worked not in your favor by his rule of not spending.

Gene Andrasco: Exactly. Exactly. He couldn’t pay for all of us to go to college. But I decided that I still wanted to do it. I was going to take out loans, get small scholarships. And then we applied for the Chick Evans scholarship, and I was fortunate to get it my second time around. After my freshman year of college, I got the scholarship.

David Hirsch: That’s wonderful. So are you an Evans scholar then?

Gene Andrasco: Yes, I am.

David Hirsch: Did you live in the Evans scholar house?

Gene Andrasco: I did.

David Hirsch: Oh my gosh.

Gene Andrasco: Three years—my last three years there.

David Hirsch: Well that’s one of the things we have in common. We both went to the University of Illinois. And one of my most formative experiences was being part of a fraternity. Well, that’s fabulous. Thanks for sharing. So when you graduated you had an accounting degree. Tell me briefly about your career.

Gene Andrasco: So I didn’t take the traditional accounting career route. I didn’t go into public accounting first—I went into corporate accounting. I worked for Amoco Oil here in Chicago and did a variety of different basic accounting jobs.

After about a year and a half, I did take a project where I moved down to Tallahassee, Florida. They had acquired a gas station chain that had a Quick Mart, and they were trying to understand how to run a quick service mart. That was a great learning opportunity for me personally.

My wife is a very strong person. I was offered the position two days after we got engaged. So I couldn’t accept it without talking to her. But she said, “Yeah.” She knew somebody who worked at Amoco at the time, and said, “If you get offered that type of role, that’s a good thing. It’s going to be nine months.” And then she planned a lot of the wedding stuff, which was good for me. She would bring me in when she needed to.

But I told her, “I know this is going to be hard being away, but I’m going to save a lot of money doing this, and I’m going to get a lot of airline miles. And we’ll fly to Hawaii for that.

David Hirsch: I’ve got some good news, honey, and I’ve got some bad news.

Gene Andrasco: When you go to Hawaii.

David Hirsch: I’m glad it worked out.

Gene Andrasco: And I worked there for about four years and then I moved over to McDonald’s, in their headquarters in Oakbrook. And while I was at McDonald’s, I got my MBA from DePaul. And then started looking at other opportunities. McDonald’s really didn’t offer too much as far as MBA positions.

Then I found a position at Kraft, where I was taking on a lot more responsibility, which is what I was looking for. And I did a variety of roles at Kraft. I was there for 15 years. A couple of years ago, Kraft was bought out by a private equity, and I took a package and left the company at that time.

And then reconnected with somebody I’d worked with in the past who’s at a company called The Marketing Store. I took a role there as the head of finance for the happy meal business. We’re a supplier for McDonald’s. We supply all their happy meals.

David Hirsch: And you mentioned in a previous conversation how many toys that is annually.

Gene Andrasco: Last year it was 1.7 billion toys were delivered to McDonald’s.

David Hirsch: That’s insane.

Gene Andrasco: We’re the largest supplier of the toys in the world. They’re small, but there’s a lot of them.

David Hirsch: Okay. Well thanks for sharing. That’s very interesting. So let’s talk about your connection to the special needs community, on a personal level and then beyond. So before Kiley was born, did you or Kelley have any connection to the special needs community?

Gene Andrasco: My wife had a cousin who has spinal bifida, but we weren’t involved in any organizations or anything. And she was in a wheelchair. I think early in her life she was walking, but she wound up in a wheelchair. She actually passed away before my daughter was born, so she was in her twenties when she passed away.

So we knew some difficulties of having a special needs child. But as we learned since then, we didn’t really know a lot. But we saw what it was like to have special needs in the family, more from a distance.

David Hirsch: What was your first reaction upon learning of Kiley’s diagnosis?

Gene Andrasco: It was mixed, because she went 18 months without being properly diagnosed, and we weren’t comfortable with her original diagnosis of having epilepsy,

David Hirsch: So she started having seizures or something?

Gene Andrasco: She started having these attacks when she was like three months old, and in a child and a small infant like that, an Alternating Hemiplegia event looks very much like a seizure. And so it’s hard to diagnose. And at the time there was no test for it. It was just a visual, what’s happening with the child, and what bucket does it fit in?

David Hirsch: Just for my own benefit, describe to me: what was it that you were observing that you knew that something wasn’t right?

Gene Andrasco: Her one arm would get stiff and stick straight out, and her head would look that way, and her eyes would pull, and sometimes she would shake. And she couldn’t move her head, couldn’t move her arm, and we couldn’t move it either. It was stiff and she was shaking. And so the stiffness and shaking is very similar to a seizure, right?

We did a series of medications all based on seizures. It didn’t stop them, and there were times when she would be having these events for four days in a row. When you talking about a child under a year old, they can’t move anyway, and you’ve got to carry them, and they’re just uncomfortable and a lot of crying.

David Hirsch: And it sounds like it’d be really scary too.

Gene Andrasco: Yeah, because we don’t know what it is. Really, my wife really pushed on it. She said, “She doesn’t have seizures, it’s gotta be something else.”

And so just started looking on the internet, and found a site that had rare diseases. It was like an encyclopedia of rare diseases. Quite quickly, she typed in some criteria and one of the things was her eyes and the eyes would pull to one side and they would bounce a little bit. And one of the disorders that came up was Alternating Hemiplegia. So we read about it and presented it to our doctors. “Hey, could it be this?”

And we were at Children’s Memorial, now Lurie. And the great doctor had only seen one patient that had this disorder. And he said, “No, I don’t think it is,” because the patient he saw needed to be hospitalized for a week. Every time they had an attack, like every month, this child was in the hospital for a week. And he goes, “Your daughter doesn’t look like that. I’m not totally dismissing it, but let’s keep looking at different things.”

And then a couple months later she was in for a test. She was all hooked up to an EEG machine, and fortunately for us, she started to have an Alternating Hemiplegia attack while she was there, while she was hooked up. The doctor was excited. “Here we go. Let’s take a look at this. I can see that something is going on with her. But nothing is reading on the computer. It’s not a seizure.” And he goes, “So you might be right.” It was just by chance that we happened to be in getting tested.

So he sent us to a specialist at Cleveland Clinic who had experience with Alternating Hemiplegia. He went through our history. We had some videos of our daughter in an attack, and they reviewed all of that and said, “Yeah, this is a classic case of Alternating Hemiplegia. We want to refer you to a doctor at the University of Chicago, Dr. Silver. He’s been studying this disorder since the late eighties, early nineties. He’s one of the original people doing it.” We’re very fortunate to have him in Chicago, because we were in Chicago too. So they started assigning treatment for Alternating Hemiplegia.

David Hirsch: Wow. What a coincidence. His diagnosis while she was having an attack and then going to Cleveland and finding somebody in Chicago. That’s wonderful. So what is AHC, and how is it typically diagnosed? And who does it affect?

Gene Andrasco: Yeah, Alternating Hemiplegia Childhood is, as I mentioned, a very rare disorder. There are less than a thousand cases diagnosed worldwide. It’s transient attacks of hemiplegia, so it’s a paralysis on one side of the body. It could be on both sides of the body, but usually it’s on one side, and it could shift from one side to the other.

These attacks could be as simple as an arm stops working. My daughter’s arm will curl up, and we jokingly call it a chicken wing, because it’s tucked up like a wing. Or her leg will come up and she’ll stand on one foot, so we call her our flamingo. It just bends and she stands, and it will not go down. Or it could be like a full body where she can’t move at all. She can’t talk, can’t swallow. Those are a lot more scary, obviously, because they’re more severe.

There’s also what’s called dystonia or dystonic attacks. And that’s when the muscles become extremely stiff. So instead of her leg bending up, it’ll be straight out. I liken it to if you get a severe cramp in your calf or in your thigh. My daughter is in pain. I’ve noticed some other kids in a lot of pain screaming. I go to massage her leg, and it’s like a steel rod. And not only is it very sore for her, but it’s also physically taxing. So her muscles are flexed and she’ll be that way with her leg, and it could be her arm too.

David Hirsch: How long would one of those situations last?

Gene Andrasco: It could go on and off for a couple hours, but we do have a rescue medicine that we can give her. It’s kind of muscle relaxant, and that reduces that a little bit. So we give her a couple pills, and they’re good, because they dissolve so she doesn’t have to swallow. There’s times where she can’t drink because her mouth won’t work. But if you put this pill on her tongue, it’ll dissolve. We’ll give her one or two depending on how severe it is. Then she’ll be able to at least sit up. She might not be able to walk still, but it will help relieve the tenseness in her muscles.

David Hirsch: So this started when she was an infant, when she was two months old. And if you had to say, on a weekly, monthly, annual basis, how many of these attacks has she had on and off over the years?

Gene Andrasco: She has them I’d say six to eight times a month. So pretty regularly. We are fortunate that she’s on the milder end of the spectrum. When she’s not having episode, she’s walking around. She can run. You can tell she has a physical disability, but she can still get around on her own. She can get herself dressed for the most part.

And there are some kids with this disorder who are in wheelchairs and don’t have the ability to talk as well. And so it’s kind of a spectrum disorder, so it affects different kids differently.

David Hirsch: You just said there’s only about a thousand cases that have been diagnosed. Is that a US phenomenon, or is it worldwide?

Gene Andrasco: No, it’s worldwide. The majority of them are in the US and some in Europe as well. I think it’s more so because it’s a newer diagnosis, and in other parts of the world that may not have as developed medical assistance that we do, it’s not as well known.

Even people in the United States that we met at our foundation meetings had gone 11 years without a diagnosis, because they lived in a rural part of the country. They went to doctors and the doctors didn’t know about it, and there were not even any writings about it. They couldn’t even look it up for the most part. So there are a lot more cases most likely out there that are just not diagnosed.

We were fortunate in 2012 they found a gene malfunction that causes AHC, and our foundation helped fund part of that research. I’m very proud to be associated with that. So there is now a test that they give kids once they present features that look like an AHC episode. They can give them a blood test, and we are finding more and more cases that way. They do a genetic test and they know exactly what they’re looking for.

David Hirsch: Excellent. So what type of advice did you get early on when this was first diagnosed?

Gene Andrasco: We got more medical advice than anything for the first couple of years, just going to doctors. There was only one medicine that my daughter takes that helps AHC. It doesn’t cure it, it doesn’t prevent it, but it makes it episodes less frequent and less severe. The medicine is not available in the United States, unfortunately. So we get it from Canada. Some people get it from India or the Bahamas. It is a prescribed medicine for migraines in other parts of the world.

We have tried to get it accepted in the United States, but the testing protocol for the FDA is very strict. In order to get it tested, they need what they call a double blind study. So they need to have some kids on it and some on a placebo. And we’re not willing to have any family take their kid off the medicine, because some families have done that, because they’re like, “Oh, we’re not sure if this is working.” And sometimes the kids have had really severe attacks that could have debilitating effects. And so we can’t as an organization do a test that puts some children in jeopardy.

David Hirsch: Wow. Well, thank you for sharing. That’s enlightening at the very least. What are some of the more important decisions that you and Kelley have made raising two children, including Kiley with special needs?

Gene Andrasco: One of the biggest decisions was my wife stays at home. We had to have one of us stay at home, because early on the number of doctor visits and specialists and therapists, there’s no way with both of us working we’d be able to manage that.

That was on day one, and then getting involved in the Alternating Hemiplegia Childhood Foundation and getting to know other parents has really been helpful to understand that we’re not alone, that what we’re facing is not unique. So it helped us therapeutically.

David Hirsch: Excellent. So what are some of the biggest challenges that you’ve encountered?

Gene Andrasco: Well, with my daughter, and what I found with a lot of children with special needs, is there are the medical problems that have that caused disruptions in the family. You can’t just say, “Okay, we’re going to get up and go someplace.” It’s not that easy. But there’s also the emotional side.

So my daughter has a lot of behavior issues, which is very common with children with special needs. It could be due to frustration with their situation, but also there’s a chemical component in the brain as well. Her brain is not as developed as a 17-year-old. Her reactions are different. The behavior is really the biggest issue.

For the last several years, we’ve been working with some great therapists. We’ve made a lot of progress, and she goes to a special therapeutic day school, which is dedicated to special needs kids and particularly some with behavior issues. And they’ve done some different therapies as well. But it’s taken a long time.

And I thought, “Oh, when she starts in therapy, six months later, she’ll be doing everything fine.” But it does take years. But we have made a lot of progress.

David Hirsch: Excellent. So is that in lieu of going to public school?

Gene Andrasco: Yeah, she started out in the special needs program in the public school, but it was a mutual agreement between us and the school district that they couldn’t give her what she needed. And so we found another school. It’s about a 35, 40 minute bus ride for her, and she’s on the bus by herself. It’s a dedicated bus, and she has an aide with her on the bus, but it has been really good for her. She’s been there for six years, I think now. So over that time, there’s been some bumps, but she’s made a lot of improvements there.

David Hirsch: Excellent. So you had mentioned in a prior conversation that the seizures are not always present when AHC is diagnosed. So talk a little bit more about that, because it sounds like Kiley has had quite a few seizures, six to eight a month. So shed some light on that.

Gene Andrasco: Yeah. So she has two things. Children with AHC, about 50% of the cases, develop seizures as well as the AHC episodes that they have. So she has AHC events, six to eight times a month. She also has seizures, which developed when she was about 11 years old. We’ve gotten the seizures somewhat under control. We’re very fortunate that she’s only had them every 18 to 20 months.

In the beginning, she was having them regularly, probably every month for about a 10 month period, until we got the right level of medication and the right medicine. Now when she has a seizure every 18 to 20 months, they’re severe. So she stops breathing. The seizure actually won’t stop, and so they have to give her a lot of different medications to get it to stop.

She’s hospitalized. We have a medicine with us at all time. One of the reasons she has an aide on the bus and she has an aide in school is that they have the medicine with them. She has to get a rectal shot of this medicine to slow the brain down. The shot doesn’t stop it, but it slows it down.

Then you call an ambulance, and then they administer other medicines. And she’s actually wound up in intensive care three times on an intubation machine, because she’s not breathing on her own. She is on that for six to eight hours until she can come back and breathe.

David Hirsch: So that’s gotta be frightening.

Gene Andrasco: Yeah. The first couple were very frightening. But then we took notes, and now we go in and tell the paramedics, “This is what’s going on, and this is what needs to happen.” And we’d go to the emergency room, whatever is the closest one. We tell them the same thing. It’s almost like knowing as much as the doctor, just from experience, and each time it’s happened, she’s had to be transferred either to Lurie Children’s or to University of Chicago Children’s, because they have the right expertise to handle it.

David Hirsch: Wow, that’s incredible. So what impact has Kiley’s situation had on Ryan, your older child, and the rest of the family for that matter?

Gene Andrasco: Yeah, it’s kind of helped and hurt a little bit with Ryan. I think he’s very compassionate for the most part with her. He’s done some good things outside of the home, getting involved in a church group and being a youth leader in the church organization. But I think some of that stems from him seeing how she struggled and being able to help her. But it’s also a challenge. We’ve been at a tournament with him—he played lacrosse in high school—and that was one of the times my daughter had a seizure and the ambulance had to come.

David Hirsch: Sounds like it would be very upsetting to see a sister wheeled away and see you guys. Wow. It sounds like it’s been very challenging for both you and Kelley, because it’s so unpredictable. It just happens, you know. I imagine you’ve been maybe out to dinner, or different situations, and you can probably count each one of those times that the ambulance had to show up like it was yesterday. And those aren’t the best memories to be bringing to mind.

Gene Andrasco: Right. But her behavior, that’s been the main thing the last couple of years. Her regular episodes of paralysis, we can work through those, and she knows how to work through them as well. But when she gets her behavior issues, she becomes aggressive.

David Hirsch: Verbally or physically?

Gene Andrasco: Both. It’s been very challenging. We’ve had to really like take baby steps to reshape her way of thinking. And we probably should’ve started earlier than we did. We saw her misbehaving, and we probably didn’t address it quick enough. We thought we could handle it type of thing. And it’s really unique how you have to handle it. You have to break things down into the simplest pieces. With my son, he would do something wrong, and he would get the consequence. And we explained why he can’t do that. And for the most part it wouldn’t happen again.

But with my daughter, it was like she almost didn’t remember the consequence. And so she had to have more consistent consequences. And so the therapist work was great. And she said, when she does something, and it was like rules, like certain things. She was physically aggressive, verbally aggressive.

And there’s a couple of things. We put a blue sticky note on the side of the cabinet and mean she does a chore because she disrupted the family. She has to help the family. There was a time for awhile that I would come home from work five days a week and there’d be a sticky note, and I would have to supervise her doing a chore.

And she wasn’t always cooperative doing the chore because she knew why she got it. And sometimes that led to another chore, you know?

David Hirsch: Remember, they’re teenagers too.

Gene Andrasco: Yeah, yeah, I know. So it’s a combination.

David Hirsch: It’s not necessarily the disease or what’s going on in her particular situation. But when you’re dealing with the adolescent, there’s that sort of pushback, and “What do you know? You’re my parents.”

Gene Andrasco: Yeah. But it’s gone down a lot, to a couple times a month. But still, when it happens, I don’t know if it affects us more now because it doesn’t happen as often. We were in such a good streak! But when she gets that way, it’s very stressful for the family, particularly for my wife and me. We both try to calm the situation down, and sometimes it turns into us turning on each other rather helping each other, which is difficult.

David Hirsch: It puts a lot of stress on the family.

Gene Andrasco: Yeah, definitely.

David Hirsch: So just from an educational perspective, she’s high school age now. She’s in the special learning program that you’re talking about. What do you anticipate will occur once she’s done with that, at age 21 or 22?

Gene Andrasco: Yeah, so she can stay in the program until she’s 22. She’s going to have to get some tutor training, but we’ve told her that she has to get her behavior in line in order to do that kind of thing. So she’s got two challenges. One is to have her behavior in line, and two is she could have a seizure at any time, so she has to have somebody with her that knows how to administer.

She’s expressed that she wants to be a helper at a daycare. She likes babies. I’m not sure if she’ll be able to do that, depending on how things work for her. I know there’s a lot of organizations that provide jobs for people with special needs. People see somebody with special needs, they kind of look longer than a normal look, and that affects here sometimes.

David Hirsch: She’s very aware of herself.

Gene Andrasco: Yeah. It could get her mad. So it’s probably best that she had a role that wasn’t necessarily public facing all the time. I know there’s like small assembly and manufacturing and sorting type of jobs.

David Hirsch: The one thing for sure is that the situation is going to evolve, and you can’t really anticipate it. You don’t know where she’s going to be next year, let alone three or five years from now.

And there are more and more programs. There’s one at Judson College. There’s one up in Union Grove, Wisconsin, which is Shepherd’s College, where they accommodate or cater to individuals who are in similar situations. And each one of them is a little bit different. So I’m hoping that the options that will be available four years down the road, or five years down the road, there’ll be just the right fit.

So let’s talk about supporting organizations. I know that you mentioned Shriners Hospital was one of them. What’s your experience been with Shriners?

Gene Andrasco: Yeah, so we have Dr. Silver, who we’ve been with since my daughter was two. He’s one of the initial researchers on Alternating Hemiplegia. He was at the University of Chicago when he met him, and now he’s at Shriners. He has a lot of knowledge on the disorder.

He’s really, really good with our daughter. My daughter actually likes going to see him. He’s an older doctor, and so she calls him Papa, like a grandpa. She gets along really well with him. He’s given us really good advice. He gets us a prescription for the medication that she needs, and he’s helped us get involved in other services and pointed out different things. So those two hospitals have been important.

Lurie Children’s Hospital. We’ve been there several times with my daughter. They have a very good pediatric intensive care unit. I mean, they have people sitting in the rooms overnight with the kids. We stay overnight. They say, if you want to have a break, go to the bathroom, get a cup of coffee, we’ll sit in here, and we’ll call you if something happens. All of their services are really good. That’s a great hospital.

And then Northwestern University and Vanderbilt University are two universities that are doing research for us right now to help find the cure for this disorder, and Harvard University as well that we’re working with, and Duke. So we’ve got some universities doing some research.

Over 80% of the kids that have this disorder have this gene malfunction. There’s still some kids they’re not sure, so they still looking for that, but now that they have a gene to focus on, they’re looking at if there’s a medicine that can help, or is there a gene therapy that could repair it? But all that stuff takes time and money.

David Hirsch: You also mentioned Clearbrook here in Illinois. Now, what role has that played in your field?

Gene Andrasco: So for us, we’ve been utilizing the resources at Clearbrook to get respite care in the home. So we have an aide come over a couple of days a week after school to work with my daughter. It gives my wife a break.

But the person that comes over isn’t just a babysitter. So she has goals that she works on with my daughter. My daughter is 17, and she doesn’t know how to tie her shoes all the way. So that’s a continual goal. She doesn’t understand how to count money real well or tell time on a regular hand clock.

And there’s other things. They have a checklist of goals that they work on. My daughter and her aide make her lunch for the next day. My daughter does most of the work now, which is great. She has been taking on that responsibility. She goes up and gets her clothes out for the next day. My daughter’s very, very structured.

David Hirsch: She likes the structure.

Gene Andrasco: Yeah. Yeah. It has to be structured. Other kids with special needs that I’ve met are very much the same way. It’s almost like an OCD level structure.

David Hirsch: I get it. I think I’m like that. At the margin. Not comparing myself.

Gene Andrasco: My daughter is to the point to where when she picks out her clothes for the next day, she lays it out on the floor in her closet in the order that it’s going to go on her body. It’s laid out like the pants are down here, the shirt’s up here, and then her shoes are in a certain spot and her backpack’s in a certain spot. So she likes order. And so part of the thing with the Clearbrook person coming over is they get all that organized before dinner, so she gets all her stuff, and she is more relaxed, because she knows that her day is set for the next day.

David Hirsch: Yeah. One less thing to worry about.

Gene Andrasco: Right, right. But Clearbrook’s been great. They also have a therapist come over once a week, kind of a behavior therapist, who just talks to my daughter and does some art projects with her. But while they’re doing their projects, they’re talking about school, about home, just talking about things.

We’ve talked about the future with them, what are our options long term, especially when the child turns 18 and certain laws change. They’ve helped us get set up with financial experts and lawyers and stuff. They have those services. They can help you to get in touch with the right people, to help you get the services that your adult child with special needs can get from the state or the federal government.

David Hirsch: I imagine, just knowing as many families with special needs children as I know, many of which are older children than yours, that the dynamics are going to change a little bit when Ryan goes off to school.

Gene Andrasco: He’s in school right now. He just finished his freshman year at Wisconsin, so he lives out of the home. That was different. My daughter was a little lost for the first couple of weeks, you know. We Skyped with him, which is great. And he picked up his laptop and showed her his room and said hi to his roommate and kind of got her comfortable with it. And then she keeps busy with her routine, so she’s not obsessively thinking about him when he’s gone.

But when he came home for Christmas, it was great. And then when he went back, she’s like, “Oh, I want him back.” She’s like, “You have to quit school and stay home with me.” He’s like, “No, I can’t do that.”

David Hirsch: So did you ever go visit him with her?

Gene Andrasco: Yeah. There was a family weekend and we took her up there for a weekend and did a couple of things. She walked on campus with us and it was good. She had fun with that.

David Hirsch: Yeah. Well, what I’ve learned is that, as the older siblings, maybe typical siblings, transition out of the nest, coming and going while they’re in college, it gives the younger siblings, regardless of what their situation is, a sort of a preview.

They want to be like their older siblings, they want to do all the same things. And you don’t want to put any limits out there. You have to be realistic, but you don’t want to say, “Well, you can’t do that.”

Gene Andrasco: Yeah. There is one difficult thing she asks about. She’s like, “I want to drive a car. I’m 17, and I’m not driving.” And, “How come I can’t go to college? Can I go to college with him?” And we had to tactfully tell her…because driving, you might have an episode and not be able to use your foot and you won’t be able to steer or stop the car.

So it’s not a good idea for you. I know you’re 17 and you want a car and you want to have a driver’s license. But we are going to get her state ID that’s a lot like a driver’s license. She’ll be very proud that she has that she could show people.

David Hirsch: Absolutely. Yeah. Well, you just want to fill in all the gaps and let them do everything they can. Part of it is just moving along and keeping up with people, whether they’re your peers or your siblings.

So what role has spirituality played in your life?

Gene Andrasco: For me, I went to 12 years of Catholic school, but I haven’t really practiced religion much after that. My son is a lot better than I am that way. He got involved in the youth program through the church, went on a couple of retreats, and actually was a retreat leader, a student leader, when he was a senior.

David Hirsch: That’s great. Well, it sounds like he’s a very well rounded young man.

Gene Andrasco: So far, so good.

David Hirsch: That’s awesome. So let’s talk a little bit about the AHC Foundation, which is located in Southfield, Michigan. How did you learn about the foundation, and what led you and Kelley to take on leadership roles there?

Gene Andrasco: We learned about the foundation back in 2005 when Kiley was four years old. She had been diagnosed for two years. They had a website, and my wife found out that they were having a meeting with doctors and other families out in Boston, and so we decided to attend and meet other families and meet the doctors and see kind of what was out there.

And they were actually doing some genetic testing at that time. So they took blood samples from everybody in the family. There was a bunch of doctor visits that month that they coordinated. It was all free. The doctors just did it as part of their research. They were getting a family history, telling our story, getting medical samples. It was great. And we met other families there.

And then the next year we found there was another family in the Chicago area that had a daughter with the disorder and that family’s aunt organized a walk-a-thon. They asked us if our family would like to join. And so we did. And we invited our families. And it was small, just like family and a couple of friends. It was just called the AHC Chicago Walk.

And we made a couple of thousand dollars. It wasn’t a huge walk, it was a family thing, and a couple of company donations. Everybody felt really good after that. I said, “We can do this again next year and hopefully make it bigger.” We started that in 2007. It was our first combined one, and we’ve been doing it ever since. And we’ve raised well over $300,000 over those years for the foundation.

That’s how we got started. Somebody else started a walk and we liked it. And then we’ve been able to help out. Since I have a financial background. I said, “I can collect the money, and I can get it to the foundation, and I’ll give you guys reports on what we collected, our expenses, and all that stuff.”

I did that for a couple of years. Then the president of the foundation was going to retire in a couple of years. His son was older. Rich George is his name. He was getting older and had an adult son with AHC, and he had his personal accountant helping out doing the books. He’s like, “Well, we need more people, more families to help out. Would you like to be president?” I said, “Well, with my job and everything, I don’t think I could run an organization. I’ll be glad to help out on the finance side.” And so in 2011 I became the treasurer for the foundation

David Hirsch: Is that a lifelong position?

Gene Andrasco: It’s not, it’s a three year term that the board votes on. I’m a director on the board of directors. And, well, it kinda is lifelong, since there’s nobody else currently in the foundation on the board that has a finance background. So I’ve been doing that since 2011. I do the financial reporting. There’s government reporting that we have to do, filling out forms. That’s pretty detailed, but I think I’ve got it down pretty well to a science.

We’re very small. It’s an all volunteer, family run organization. So everything is done virtually, like over the phone. Excel is our financial system. We’ve talked about getting QuickBooks or something, but it’s not that level yet. And it takes an investment to put in that software and to train people on it. And right now we’re just doing Excel. Of course, I know how to do that because of my career. So I’ve been involved in the foundation since 2011.

The foundation helps raise money in many different ways to fund research. Since 2010 we funded over $2 million of research at a variety of institutions—a lot at Northwestern and Vanderbilt. We’ve funded some research in Europe and the University of Utah. The doctor that’s at Harvard right now was at Utah before, and so we’re looking at funding some stuff at Harvard as well.

Different families put on fundraisers like we’ve done our walk every year. Other families do small things like that. We have one major fundraiser online each year. We use an online software to collect donations, and then they just deposit the money into our account. And we download the information, but it’s a good way to set up web pages about an event.

And so every two years we have meetings. I mentioned in 2005 we went to a meeting with doctors and families, and the foundation funds that every two years in different parts of the country. We have families scattered all over the country. And it’s hard to travel with families with children with special needs. Financially it’s a burden on some, and just physically getting kids there. And so we’ve had the meeting in California, Boston, the Carolinas, Chicago, Indianapolis, Minnesota. So we move it around. This year it’s in Newark, New Jersey, a shuttle ride from the airport. So it’s very convenient. People don’t have to rent cars or anything.

But we do bring in researchers and doctors, and we started bringing in specialists. So our behavior therapist, she’s going to be at this meeting. She gives advice on behavior issues. We’re having the person we’ve worked with to set up a financial trust come in and talk. We’ve had other people bring in their therapist for physical therapy, different lawyers and stuff come in, because it’s not just taking care of the child’s medical needs. There’s other things that you have to set up for your family to get ready for the future.

We even have people come in and talk about assisted living type situations for when the kids are adults. So we mix it up every meeting and try to get different people to come talk. Hopefully each time we have it, we have more information on research.

So it’s a great way also for particularly families that are new, younger families, to meet people. We have a community online with Facebook, but when you get to sit down with somebody and talk to them and meet their children, it’s more powerful. You get that connection.

David Hirsch: Sounds like it’s a wonderful program, and you make these lifelong friendships.

Gene Andrasco: Yeah, absolutely.

David Hirsch: People you have something in common with. It’s hard for other people to really relate if they’re not going through the same thing.

So I’m thinking about advice, like important takeaways that come to mind when raising a child with differences. What advice would you offer?

Gene Andrasco: The way I was brought up is kind of do it yourself. Hard work. You can work through anything. That’s not the case with special needs kids. You have to get help and you have to get it early. I mentioned that with my daughter’s behavior, I should have gotten help earlier. Things could kind of get away from you if you don’t. I liked to think that I could work through a lot of things, but we couldn’t work through that.

David Hirsch: So we’re guys too. So when we’re lost, we’re not going to pull over and ask for directions. So we need to get over that. We have to discipline ourselves to say, “Wait a second. If I’m spending too much time, or I can’t do this, there’s got to be somebody that can help me.” I’ve got to leverage my time, and we need to have solutions faster.

Gene Andrasco: And really reaching out to people and letting them know, because there are people that even if they can’t help you, they might know somebody who can. The one good thing about the internet and social media is it does help people connect for children with special needs, and it helps families share their story easily and get advice.

My wife communicates with other mothers on a Facebook group that our foundation has set up. Sometimes people go, “Hey, I’ll take a quick video of my child. This is what my son or daughter is doing today. Has anybody seen this, because I’ve never seen it?” And people respond,” Oh yeah,” or, “No, I haven’t seen it.” That type of thing. Yeah, a special needs child is different, but don’t put a cocoon around your house.

David Hirsch: That’s great advice. So I’m thinking about the advice you might have for dads with a child with a physical or intellectual disability. Any specific advice you’d give them?

Gene Andrasco: Yeah, we kind of joked about earlier. You’re a guy, you need help. We need help. You have to admit it early that you can’t do it alone. Which isn’t always the easiest thing, because you think, “Oh, it’s just raising a child. Yeah, there’s these different issues, but we can work through it.” And really getting help, talking to other families that have special needs to see what they did or what they wish they would have done. I think that’s very important.

David Hirsch: So why is it that you’ve agreed to be a mentor father as part of the Special Fathers Network?

Gene Andrasco: Now, thankfully, a guy I know through my son’s Lacross program introduced us on LinkedIn a couple weeks ago. I had never thought of officially mentoring. I talk to some of the other parents once in a while, and there’s some of the other board members on my foundation that I’ve talked to.

But it’s a great way to help younger dads learn from what I did, or what I wish I would’ve done. It took me, like I mentioned a couple of minutes ago, reaching out to people, getting help. Recognizing that you need help in getting the help for your child.

David Hirsch: Excellent. So is there anything else you’d like to add before we wrap up?

Gene Andrasco: I really appreciate your time and the efforts you do for fathers and special needs fathers specifically. I would ask any other dads who have children with special needs who’ve gone through several years of experience to definitely get involved and help other people who are in a similar situation, because you will benefit from it indirectly.

David Hirsch: So if somebody wants information on the AHC Foundation, where would they go?

Gene Andrasco: Yeah. Our website is www.ahckids.org.

David Hirsch: Excellent. So Gene, thank you for taking the time and the many insights. As reminder, Gene is just one of the dads who’s agreed to be a mentor father as part of the Special Fathers Network, a mentoring program for fathers raising children with special needs. If you’d like to be a mentor father, or are seeking advice from a mentor father with a similar situation to your own, please go to 21stcenturydads.org.

Thanks again, Gene.

Gene Andrasco: Thank you.

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 fathers to support fathers.

Sometimes the mentor father is just there to answer a few questions. Sometimes they become good friends. It’s a proven support system for new fathers with special needs kids. If you’re a father looking for support, or if you’re a dad who’d like to offer support, go to 21stcenturydads.org.

David Hirsch: And thank you for listening to this Special Fathers Network Podcast, stories of fathers helping fathers.

Tom Couch: The Special Fathers Network podcast was produced for 21st Century Dads by Couch Audio. Again, to find out more about the Special Fathers Network, go to 21stcenturydads.org.