CdLS Connections
CdLS Connections
A Father's Story - Meet Edgar
A fellow CdLS dad, Gary sits down with Edgar to hear a father's perspective on having a child with Cornelia de Lange Syndrome (CdLS). Edgar, originally from Mexico, is the father of Daniel, a young boy with CdLS. Edgar shares his story of meeting his wife Ulzi, starting a family, moving across continents from Mongolia, back to Mexico and to Switzerland. He shares his journey with receiving the diagnosis, his role as a father and the challenges on accepting the diagnosis, the impact on their marriage and how Daniel has brought hope, growth and strength to their relationship and family.
You can view this podcast and others on our YouTube channel.
Help is continue to bring stories that enable others to learn, offer support and encouragement and lift the feeling of isolation and loneliness by donating to the Canadian CdLS Foundation Registered Charity.
Welcome to the CDLS Connections podcast. Today we're meeting Edgar Solis, the father of Timujin and Daniel. Daniel is their youngest child, who was born with corneal deline syndrome. This podcast was recorded in Geneva, Switzerland.
SPEAKER_01:Why don't you tell me a little bit about yourself?
SPEAKER_02:Yes, so my name is Edgar, and I was born in Mexico. And Yes, and I think all through my childhood and my youth was not the easiest of the childhood and youth. I actually, I always tried to fit in in different groups when I was a child and when I was a youth. So when I was around like 14 and 15, I started to, yeah, to actually, like, do, like, hard drugs. Oh, yeah. Yeah, so that was, like, the beginning of, like, a history that I didn't know how my life was going to look like. Yeah. Like, back then, I really didn't have, like, so much hope, so... I had the blessing to have parents that actually care for me, and they sent me to rehab, and actually I accepted to go to rehab. Yeah, yeah. So then this was a Christian rehab, and ever since then, my life took a shape in different ways. So then I met my wife, Uji. Right after rehab, I decided to go to the U.S. to school. So just to change, to be in somewhere different that I was not going to be exposed to the same things that I was exposed when I was in my youth. So then I went to Bible college with my wife in the US. And I never thought that I would meet such a wonderful woman. And when we met, It's like she's from Mongolia. I never heard about it. I'm from Mexico. We barely speak English. And the only thing we have in common is literally like the M in Mongolian, the M in Mexican. That's it. Very different lifestyles. And then we just got together. We became best friends. Yeah, we were like doing internship in New York and then graduating and having all these plans in life and all these things. and then so I decided to marry her right away I know that she was the one like I just knew it and then she was so wonderful always but a little bit of Fast forward, we had our first child and his name is Timujin. And yes, we started a little bit younger than we wanted, just right when we got married. Timujin was born, like literally we knew that she was pregnant the month after our wedding. So yeah, so I was quite young, 23. And, but everything was great. Then he was, then we had him and he's a completely normal kid. And we're just like enjoying life, of course, having the struggles of career, having the struggles of money. We're young parents and these... Where were you living at this time? And yes, so we were living in Mexico. We went back to Mexico. And yes, and then... When we had Timujin, when he was around two, three years old, we started to have the desire to have another child. And at that time, I was like, you know what, whatever happens, happens. Like, let's, you know. Or either way. Yeah. So, yeah, so then we learned, actually, in one of our trips, first trips as a family to Mongolia, that she... that she was pregnant and I remember having the ultrasound in a little remote town in Mongolia the only like ultrasound there and it was like a very old TV and then there we saw Daniel for the first time we were traveling in Mongolia and then even then we traveled then through Asia and we really enjoyed like also traveling so So then we go back to Mexico and then she's already like, she's pregnant, like three, I think she was already like two months. And then we go through the process of the pregnancy as, you know, it's the second one. So you're like, everything is like easy peasy. Like we did one and it was great. So, yeah, we went through the process, but she... But I started to notice that she looked very tired and that she was tiny. But she's Asian, so I was like, okay, it's just your genetics and you're just small. And at the eighth, no, seventh month, the doctor kept telling us, hey, you should check the kid in a specialized ultrasound because he's not... growing like I see all his parts but he's he's not like really like growing as it should be so but don't worry about it I just go and then and then and then check so then we have an appointment in Mexico City because at the time we live in a small town yeah so we we went to Mexico City one one Friday and then the lady in the ultrasound starts to make the ultrasound and then she is going and going and going. And then she's, you know, she starts to look a little bit confused. And then she turns at me and then she says, do you have medical insurance? And I'm like, well, like in Mexico, all healthcare, you almost pay out of pocket because it's inexpensive. But then I'm like, no, I don't have health insurance. Then she keeps going. And then she's like, hey, listen, your wife needs to be hospitalized now. At seven months? Yes. Wow. And then she's like, I see something on your son, on the stomach, and then this is a hernia, like a problem with his diaphragm. So he needs to be... attended in a high level hospital not just like the the regular hospitals that you give birth because when he because most likely your child when he goes out of the belly he would have problems breathing and then we need to give him assistance right away and then there's in Mexico there is just Two hospitals of third level. One is Hospital Los Angeles, which is very, very expensive. And it was just very unaffordable for us. It wasn't an option. Not an option. But the lady says, I work actually in the government hospital. That is the third level government hospital. It's like, I'm going to try to get your wife in. And I'm like, okay. So then like all this, everything is going through our mind at that station and she calls and then she says, you need to be in the hospital tomorrow in the emergency room and we will treat her as an emergency and we will let her in. So since then, it was like a really rough journey for us because we were very confused of what was going on. So then she's in the hospital, in the government hospital, and it's very straight. I cannot even see her sometimes. She's like really being taken care of. But then Daniel was born. So she
SPEAKER_01:was there. How was Daniel early? Was he born early?
SPEAKER_02:He was, I think, eight months. She was not that early, but a little bit earlier. Not the full nine months, but probably eight. And yes, and then when he's born, of course, he needs to have right away the surgery. So the next day I go there and somebody in the elevator looks at me and and then he's like, oh, now it makes sense. And then I'm like, why? Why? She said that it was the nurse. And then it's like, yeah, your son has a lot of hair, just like you have in the eyebrows.
SPEAKER_01:Oh, really?
SPEAKER_02:Yeah. And then I'm like. Yeah, it's my son. Of course. Yeah, of course. And then, yes, and then he goes through the surgery and they...
SPEAKER_01:Had I seen him yet?
SPEAKER_02:I haven't seen him. I haven't seen him. I heard this and then I haven't seen him. And then now I go to see him and then he's about to enter to surgery. Yeah. And I see him and of course I see this face with the eyebrows and he's a baby, right? And then I'm like, okay. I mean, for me, as a dad, for me, I was just in love of the uniqueness of my child. But I also didn't think that... I was like, okay, maybe like the eye is a little bit small. Maybe the small is a little bit odd, but also I'm like, this is a baby. So maybe they like grow and they kind of like fix themselves or something. And, but he was in, uh, in actually the, um, uh, ICU. Um, Yeah, so then he got the operation and then he was in ICU for a month recovering. And I would get to see like tiny babies and very like dramatic cases in that hospital and Daniel. And then all throughout this time, of course, I see something different, but I would see him one hour a day during a month. Yeah. And so I didn't quite like really connect the pieces. The doctors were saying, okay, like his thyroid has a problem. And then I couldn't understand. So it was all like symptoms, but not really your son has cornelia de lang. And finally, we're ready to go home. And... And I receive a paper and I'm waiting for my wife in the room and I start to read the paper. And then in the paper it says, possible case of Cornelia de Lange. And that's the first time I read the word Cornelia de Lange and that I'm aware of it in my life. And I'm like, possible what? And then I start to check in the internet.
SPEAKER_01:Yeah, we're, yeah.
SPEAKER_02:Like right away? Nobody talked to you? Nobody. They say like they might have something genetic, but we don't know. And they're like doing all this. So because they couldn't test, they just wrote possible case of Cornelia de Lange because they say he has like four features of the syndrome, then we can... We cannot do a full diagnosis. We knew the test. But right now we can kind of tell you that he has cornelia de lang. And I think like that's... Like now I see it and it's like... I see child that they don't get diagnosed at all. And that's... Yeah, that's sad. But for us, right away when he was out of the hospital, we... We knew and then we learned this word. And then I was driving back home and I'm like, I read this. And then we were just happy to take him home. And then he's like, no, I think he has something. So then I think that was the start of.
SPEAKER_01:Yeah, because I think, yeah, you probably thought that that part was over now. The surgery.
SPEAKER_02:Yes. I thought it was good. It
SPEAKER_01:was good. No, he made it through the surgery and now we can get on with our life. But only did you realize it was just beginning.
SPEAKER_02:Yes. So, yes, it was not only like that traumatizing month in like Mexico City where we had to like leave everything and then leave in... We were living in an Airbnb and then like just seeing the kid one hour a day and yeah... So, no, it was the beginning of a journey. And, of course, we were completely terrified. We were confused. We went through all these, like, emotions. And for me, it was like, is there even, like, a medicine or how do you cure, like... What does that even mean? Right. Yes. And then... It's like even the understanding that it's a genetic, like a genetic problem, a genetic, yeah, not disease, like, yeah, it's just a genetic problem. That was very, like, foreign to my brain. I couldn't understand. So... So now what? What do we do with this?
SPEAKER_01:Yeah, so what were your next steps? So after you read that, you did some research on the Internet, and did you have anybody helping you?
SPEAKER_02:No, not at all. Like, of course, we tried to look for the genetist, and then they said, like, yeah, he most likely has it, but not... I feel like there was not enough like actionable steps because it's like, how do you cure this? How do you, like how do you... What's the treatment? Yes, what's the treatment? Is there something? And then they were like also like unaware. So it was more like, okay, let's see like if that everything inside is working, you know, like that the surgery actually is effective, that he's like eating well and all this. And then... But we definitely didn't know what exactly to do. So it was more like medical follow-ups. Like if he was like a normal kid, then the medical follow-ups. But I started to look for a lot of resources. Then I came across CDLS USA and CDLS Spain. And then we got... information but of course it's a lot to digest when you're new it is like you see like the charts of growth right and then like okay like where where is my child sitting in the in the grow chart like would he grow like he's a little bit like is this mild is this a little bit severe like what other like consequences is is he gonna have because i'm reading all all this and i'm also looking at some cases because we also started to like, okay, who has Cornelia de Lang in Mexico? Okay, not many. Then in the US, we didn't feel because we were not in the US, we didn't even feel like we can reach out to the CDLS USA. Yeah, I don't know why, but it's like, okay, we only have these resources online and then now let's, you know, let's move forward with life. So, I think like for me, that was like a very like, like I was in shock and I was like really not mature enough to receive this information. So I was like really like me, I said that and I'm just talking about the shock and I couldn't kind of process it and take it. I was like, at some point I was going out. Like even often with my friends, I was going out and then kind of like, I need to forget about this situation. So this was a very, also very tough time for us in the relationship where it was tested because we have one perfectly normal kid that is going on with life. Then we have Daniel that we still trying to figure out how to navigate. And I kind of like didn't want to accept that. that the challenge ahead of me. And, uh, and of course, like, uh, I was just like 25 or yeah.
SPEAKER_01:Yeah.
SPEAKER_02:Yes. So, uh, yeah. So Uji, when my wife will see, uh, one time she, she just told me, Hey, like, if you cannot take the challenge, I'm moving back to Mongolia because she really was like, like, you're kind of like disconnecting completely from the family. Uh, And I need some support. At least in Mongolia, I have my family. And I'm like, okay. And then I told her, no, if you need support and that, and you want to go to Mongolia, it's like, let's go to Mongolia. Like together. Together. But did
SPEAKER_01:you understand where she was coming from? Could you see?
SPEAKER_02:Yes. And now I can see it clearly. But back then, I was more like, she needs the support.
SPEAKER_01:Yeah, sure.
SPEAKER_02:From the family, she needs somebody that stays like that. And Daniel required a lot of care. She was... Because she was committed from the beginning to make the best out of Daniel. So even in the feeding, she refused to feed him by tube. She was like, I'm going to breastfeed this kid. I'm going to feed this kid. And then... She just took on the challenge and she was doing everything possible. So this is how now we see how Daniel brought so much growth in our relationship because either you make it or you die. But the growth, the hope that he brings to our life, how he helped me grow is just... because from there and then from that situation and from that time that we were in Mongolia, we kind of strengthened our relationship. I was able to be focused on the family more, on understanding Daniel, on having the support of the family. In Mongolia, where the medical care is really precarious, I guess we didn't even gauge that if something happened to Dan, what would we do? So you moved there for support, family support. Yes, family support, but the medical support was apparently not there, and we didn't even kind of process this. Yeah, yeah. But one thing is in his development, for example, her family is like, no, this is a normal kid. and then we're going to sit him and then we're going to teach him how to sit. So Daniel learned how to sit there, started his first steps there. So it was a great development for him to be in Mongolia, surrounded by all this family. They love kids and everybody was taking care of him, embracing him. Amazing to see. But eventually we went back to Mexico after a season. It was going to get too cold in Mongolia. So I think like since then, then it started another stage of our journey where it was like, okay, so then now we accept or I accept that I have a child with Cornelia Delange. Now how I can support him, how I can... advocate for him how can I give him the best life that he can possibly have and and again like my Ulsi start to look in Mexico right and left for like therapies and what what was the best thing for him and we all of a sudden we start to like taking him to different therapies like psychomotor therapies like so it was more that that stage was more like the development no medical issues until one day he start to cry like very he's a very happy kid he smiles 24 7 laughs 24 7 he starts to cry desperately and I'm like okay no no no no no everything is okay and then Then he started to bleed through the mouth.
SPEAKER_01:Oh, wow.
SPEAKER_02:So then we're like rushing to ER. When we get there, they say that they have to intervene him immediately because the intestine is twisted.
SPEAKER_01:Okay.
SPEAKER_02:And so he went through surgery. Mm-hmm. And literally the doctor came and showed us we couldn't save this part of his intestine. And then she comes with one third of the intestine in a plate. And she's showing us that and like he's there like you said, like what's this machine that holds you when you're in coma? Oh,
SPEAKER_01:yeah, like a ventilator?
SPEAKER_02:Yes, the ventilator. So he's in the ventilator, and I'm asking, is there any hope? And then the doctors are like, it's just making it through the machine. And somehow, like, during that moment, it's like we really saw the hand of God, and then we were like, I... There was something that I said, like, Daniel is not going to die. So I was, there was just such an oath. You might call it like an oath of confidence and trust that he was going to make it. And yes, and then he did. He made it through the ventilator. But, you know, now you're dealing with a child, this Cornelio de Lange, and then now he has like even like the colostomy back. His intestine is out. So it's like, okay, like now, so it's like on top, you know, like this, you say like, when is this going to end, if ever? So yeah, like eventually also the intestine again puncture, they need to, he needs to go to surgery again. So this is like the kind of things like now, you know, like, I see his stomach every day, right? And then he's full of cuts and he has the marks. And then I always tell, when I'm facing stuff at work or with relationships or with that, it's like, do I really have a problem? I think through this lesson, I always look back at this. I have very clearly in my mind how he was in the hospital. And I keep telling myself, like, do I really have problems? Yeah, so it, like, really gave us a different outlook in life. And this is, I mean, of course, this is, like, very bad, like, very bad situation. But again, his growth, his hope, always, like, when you see him, like, the way that he... that he faces life, that he's always smiling, that he has gone through all this stuff. And I'm sure that is true with like all Cornelia Delany kids and, and that their outlook in life, it's so bright always, like regardless, they don't have filter. And this is beautiful. Like he has taught us how to look at life in a very, very different way. So, uh, so yeah I think like that is like the other the other lesson like of course we're always like freaking out when he's like sick like we always also back to this is not all like pretty because he gets sick and then we're like all nervous and and what's gonna happen to him but after he made it through uh yeah we found a phenomenal like therapy center in Mexico like Like, really, like, really, really phenomenal. Like, I didn't even know that it existed. And my wife kept pushing to, I think this is the other stage now when you want your kid to thrive and then to make this network. So we got connected with the CDLS Association in the U.S., I ran the marathon for Chicago for the CDLS Foundation. She ran the following year. Every kilometer that we ran, it was a different child that we were, like, having in mind. And, of course, the 42.2, or the 26.2 kilometer was Daniel. And, you know, so then I think he has, like, inspires, like... Like crazy. And a lot of things. So I know that a lot of parents will listen to this conversation. And it's not... And I really... It's like there is hope always. And that it's for a reason. And it's not been easy. But it's been like the best gift that God has ever given us. Now I like really... I mean, fast forward, now we're in Switzerland and we would have not even ever imagined that this would even happen to us, these opportunities, these connections. Yes, it's because of God. It's because God gave us Daniel and then he's like taking care of him and taking care of us. Yeah, I just love his life and I'm very looking forward to the future. I know that, you know, sometimes as a parent you have these fears, but really it's like enjoying and being present with your kid while you have it because we don't have it for granted and this is a reality. But it helps you to be present in every moment of life.
SPEAKER_01:Yeah, that's great.
UNKNOWN:Mm-hmm.
SPEAKER_01:So you ran and raised money for the U.S. CDLS Foundation. Have you managed to make it to a conference?
SPEAKER_02:No. So that's the thing. We want it and then COVID happened. And then it's like, how do we connect with them, right? Because... We needed also to create this network of knowledge and support. And I think the marathon was a very nice way that we are not from the US, like Mexican, Mongolian. We don't have really an entry door to even get the benefits out of it. We could go to the conference for sure, yes. But for example, we cannot go to the... children's hospital or that under their sponsorship so i was like how can we give back you know how can we because the materials are there you know like all this work is there so you as a parent like when you like at least you have something to go online a resource to go online yeah yeah sure yeah
SPEAKER_01:what about uh have you have you connected with other families
SPEAKER_02:Yes. So like,
SPEAKER_01:tell me, maybe tell me a little bit about what that was like the first time you met somebody else.
SPEAKER_02:Yes. And I was actually in. So my wife met a lot of people through social media and it was COVID. And she has given support and advice to families via Instagram. Of course, she's not a medical professional, but as far as she can go, I'll lead her to something. So that is nice that she has the community there. But the first time actually was during this Chicago Marathon. And then we met the family, Gino's mom and dad. And oh my goodness, it was... It was amazing to see other kids, other families going through the same thing. But yeah, it's definitely like... I feel like it felt very natural because you feel like family when you're there. Because it's so unique. Yeah. that you feel identified right away of like the journey, like the things that you talk about, the conversations. So it was, it was during the Chicago marathon where we got to connect to other, other families. And then we have met, uh, a few other families, uh, uh, yeah, like we went like again to the second time in Chicago in the marathon. So we have other families there, but yes, we haven't had the opportunity to go to the conference. We'd love to.
SPEAKER_01:Yeah, yeah, sure. I'm sure you will one day. Yes. Maybe, what do you think your son thinks about this? You're the firstborn. I forget what his name is. Timujin. Yeah, Timujin. What do you think it means to Timujin?
SPEAKER_02:Yes. To have a brother with CD-Less. Yes. Well, first of all, they love each other intensely and i'm so proud because like me myself i didn't have a good relationship with my brother so like growing up so we were always fighting and that so seeing him how he cares for him today we had a meeting with the the teacher at the school and then she said please tell timujin to not worry too much about daniel when he's at school He's fine because he's always looking after him. And this is beautiful to me. Like I'm talking to you about like my brother will always exclude me from his friends and so on. And then he's always including. And I think he's the best brother, best teacher, best therapist. Yeah, we're just like incredibly blessed. Yeah. Like about what he thinks, we ask him, what do you think about the brother? Like, do you? And then he's like, yeah, I just hope that he could talk back. But that's his only, it's like in shape in the phone, in what they do. It's like, I wish he could just talk back. But yeah. But not to say that that was a while ago, because now he communicates quite well as well, like through signs, through sounds, and so on. But yeah, of course, I cannot talk 100% for what my son feels. And we always try to check on him. But for what I see and everybody sees is that they have a very strong bond.
UNKNOWN:Mm-hmm.
SPEAKER_01:Yeah, because CDLS can be, it's overwhelming, I feel. It could be for the whole family. Everybody is trying to navigate in the same way. And it's really hard for even us to understand what's happening, but especially for, you know, siblings to understand. Yeah. Yeah, it's incredible. So you're here now. What's the situation like now? Is he going to school? It's day-to-day. Maybe talk a little bit about your day-to-day here. What does it look like? And now that he's a little bit older, maybe talk about what your role is now in his day-to-day. I guess he's medically more stable now?
SPEAKER_02:Absolutely, yes. He has been medically stable for two years. Okay. And again, we recently moved to Switzerland. So in Mexico, he had like therapies every day in this therapy center. What type of therapies? So it was everything through like they have like virtual therapy. They have like psychomotor therapy. They put them in the pool. They like their other kids with other syndromes, mostly Down syndrome therapy. Like, again, don't even ask me how and why my wife finds this stuff because I was like, this doesn't exist. Like, this is Mexico. Like, yeah, like I was saying, the government doesn't give help. Like, you know, we are on our own. And then there she goes and then finds a foundation and that the wait list is two years and then she gets in in like three months. So this is the kind of wife also that I... Yeah, that I have. Yeah, yeah. It's really... Yeah, she's fierce.
SPEAKER_03:Yeah.
SPEAKER_02:So I feel like for me it's like even... Yeah, it takes a lot of the weight out... wait out from from me of course but uh i i mean i fully like trust her and then she's really an advocate but going back to the questions of the day to day like yes in mexico it was therapies he was going again like to school so trying to integrate him in in in school and therapies and then recently moved to switzerland and in mexico they won't take him in schools they will say like we cannot And we got a no for like three different schools. And finally, a very small Montessori school was able to accept us in Mexico. We were very happy, but then we moved to Switzerland, so we didn't expect much that he was going to be able to even like get into school. But the moment that we get into the office here in Switzerland, they say like, no, he needs to go to school with the regular kids and then we'll provide everything that he needs to there to thrive so they put him in his own grade at his own age with kids his age but he has an assistant and this is public school Switzerland and we are still waiting and hoping for him to get to the special needs school Because they say that is like super, super amazing. Like therapies and really like personalized and that. I believe that because so far with this system is that he doesn't go full day to school. He goes half day. And he has the assistant at all times with him. And now he's little by little see how... much hours he can take but it's with a full group of course it's challenging because the other kids of course kids his age are like already like super developed and and doing different things but it's in the class like you you can ask like even like probably the parents the sense of empathy that the kids have with that and they take care of him you know like yes like the little girl in the in the like going to the forest like he like holds him like treats him like a you know like a little baby and then like takes him by the hand and really they take care of him so that's been a good a good experience so far we still wanting him to go to the school that he should that he should be and and hoping for that uh um But yes, the day-to-day is that. He goes to school and then I just come from work or work from home and then I'm mostly available to both my kids and of course being present and playing with them. And Timurgen has all these activities. So he has become a little bit... independent because he goes like oh i'm going to play soccer with my friends and then mostly we have to stay with with dan so that's like uh uh yes something that we're like trying to adjust on how to balance this not to uh yeah because i want to go there and then yeah like his brother cannot do the same things but again i i For me, it's more like, okay, they are like this part. But the mother, like again, like Ulsi would put him out there. Like she would, she doesn't care. Like, yeah, excellent, excellent mother. Like she pushes, always I tell her like, man, like what are you doing is very hard. Like, why are you pushing? Like, this doesn't make sense. I almost even, like, sometimes get upset because it's like you're putting yourself in such a strain. Like, just for, like, the kid to be, like, having, like, the same opportunities and is great and that, you know. But she goes above and beyond, definitely. She really does. There is no... Like I always feel that when she's, when Daniel is with her, there's no limitations. He's treated as a normal kid.
SPEAKER_03:Yeah.
