

Xander & Carrie
Season 2 Episode 4 | 44m 19sVideo has Closed Captions
After their twins contract a genetic disease, Xander and Carrie look for a history of HLH.
Xander and Carrie, whose twin boys were saved from a genetic disease by an anonymous bone- marrow donor, test the relationship between genetic and genealogical ancestry while searching for the disease in their own family histories.
Problems playing video? | Closed Captioning Feedback
Problems playing video? | Closed Captioning Feedback

Xander & Carrie
Season 2 Episode 4 | 44m 19sVideo has Closed Captions
Xander and Carrie, whose twin boys were saved from a genetic disease by an anonymous bone- marrow donor, test the relationship between genetic and genealogical ancestry while searching for the disease in their own family histories.
Problems playing video? | Closed Captioning Feedback
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Learn Moreabout PBS online sponsorshipWoman 1: There's a little bit of guilt, um, knowing that you, uh, your genetics gave your children this horrible, awful disease that kills the majority of kids that have it.
♪♪ Man 1: We have identical twins.
The boys ended up with a extremely rare blood disease.
Woman 1: I can remember exactly how hard that was, you know?
Man 1: Every day, sitting there at the hospital, putting on the mask and the gown and the gloves.
Woman 1: Washing your hands.
And we could not take them out to play with other kids for fear of them getting sick.
Man 1: You know, we got scared when they would— when they had a fever.
Does that mean we have to go to the hospital?
Do we have to get there right now?
♪♪ I believe that things happen for a reason.
[birds chirping] ♪♪ To have something like this happen to our boys, I guess deep down inside I think I wanna know that there's more of a reason why it happened.
♪♪ - Hello, I'm Lise Simms, and each week on our program we bring you the story of someone who for one reason or another wants to get in touch with an ancestor or an entire generation of their family tree and we help them do just that.
We're an ongoing project dedicated to connecting families across generations, and today we are talking to Xander and Carrie Denke.
Hi you guys.
- Hi.
- This is a big story so we're gonna just jump right in.
- Can you clarify for me, HLH is a rare blood disorder, but I don't know what that means.
- Well, there's a, a mutation that is caused that overproduces this certain cell, a histiocyte, that attacks red blood cells, so it affects the liver, the organ, the... - Spleen.
- ...the spleen, the, um, the— - Central nervous system.
Lise: And what's the prognoses?
- Uh, it's a fatal— - It's fatal.
- —disease that it will go— your body will go into massive organ failure if, if something isn't done.
- And what can be done?
Xander: A bone marrow transplant is the only, only cure.
Lise: So how old were the boys when you received the diagnosis?
- Three and a half, four months.
- Yeah.
Lise: Oof.
- Yeah.
Lise: And immediately you jump on the donor bandwagon, I'm sure.
You tried to get yourself in the system?
- Yeah, as soon as, as soon as we knew, uh, with Ethan, uh, he was diagnosed, and they send off his DNA into the registry so they can match it up with all of those who have previously registered.
Lise: So the boys weren't diagnosed at the same time.
- They weren't.
Uh, they knew that Ethan had HLH, and they tested Keane, they took his blood, sent it off, but it was a long process.
Carrie: Mm-hm.
- Two full months to wait to find out whether or not he had it.
Lise: What's it like to discover your newborn babies have a fatal blood disease?
- It's hard.
I mean, you know, it started out as a fever and, uh, a really tight stomach, distended abdomen, and those don't seem like too bad of a thing, you know, something normal.
- Well, and you don't want to be that parent.
You know, you don't want your child to be that sick child.
[emotional] And you're hoping and praying that something will happen, some miracle will happen and that it'll all go away.
- Yeah.
- But in our case, it doesn't— - Yeah.
- —and we have to have that transplant, or they die.
- That's, that's the miracle you're looking for.
Xander: Yeah.
- So, once you join the donor program, how long did it take for you to find a donor?
Xander: It was over 4 months, uh, and it was set up.
We were ready to go.
Uh, the boys had had chemo and, and were preparing for the transplant, uh, but we lost that donor.
So, we were set up.
Two weeks before transplant they called us and said, We're sorry— - It was the worst.
- —we can't tell you why, but, uh, we're now following up on another possible match because the donor fell through.
Lise: Carrie, you say that was the worst moment.
- Yeah, well, you're, you're ready to go, you're prepared.
You know, the boys are undergoing chemotherapy and it's hard enough to go through this and then to find out that you lose a donor— - Yeah.
- —is just like a— you know, it's like a dagger to your heart and you just have to get right back on the horse, you know.
Lise: And you did.
Carrie: And yeah, we had to, we had to.
- So how long did it take, then, to find the donor you ended up with?
Xander: It, it was another couple months.
- Yeah, a few months after that.
- Um, yeah, I think they maybe had a backup, and— but were ready to go to test them to make sure they would be a good match and that they'd be willing to and, and then we were ready to go in September, so.
Lise: So, you get the donor.
The bone marrow transplant takes, and do you immediately know it's a success or is there a time period before you know?
Xander: Yeah, it was, um, uh, it was a— Carrie: They grafted right away, um, about a month in after the transplant, 100% donor, meaning, they now are producing their donor's blood in their blood systems.
- Yeah.
- And that is kind of rare, so we knew right o— right off the bat they were.
Lise: And you know that this donor is a 9 out of 10 match and you want to know if you could possibly be, or how could you not possibly be related to this donor.
- Well yeah, when we were there, the doctor mentioned that a-an identical twin is a 10 out of 10 match and our donor was a 9 out of 10, so it just made sense to us— - Yeah, it's logical.
- —that, you know, could we be related and wouldn't that be amazing?
I-I think I wanted it more than anything, for that to be the final, kind of the final piece.
Carrie: To complete.
Xander: Yeah.
Carrie: To complete the whole process.
- Yeah, to be related.
- It would just, it— yeah.
- To make it all worthwhile.
Lise: Mmm.
- To, to really kind of bring some meaning to this that we could connect with somebody, a complete stranger.
- Well, we already have our happy ending, but this would just be so perfect.
Lise: So at the beginning of the journey, this is where you stand.
This would be the perfect ending, you're yearning, hoping, wanting, and you have something else you're looking for along the way.
Xander: Well yeah, I mean, here we— a million to one chance that we both have this recessive gene, we, we— our boys have HLH and we're curious about our family.
Uh, the past children who may have passed away and whether or not we now know what HLH is, could we go back through our family history?
Could we, you know, nail down infant deaths and, and put a label of yeah, it was HLH?
Lise: What a gift.
- Yeah.
Lise: When this all begins, right at the beginning of your journey, you want to identify the donor, but there are some anonymity laws, so the National Marrow Donor Program actually sends you a postcard— Xander: Yes.
- —and this is where we're going to start.
Let's watch.
Xander: See, we got this letter from our donor.
They keep it anonymous, so she sent it to us, but it goes to the NMDP.
Man 2: What did they do?
Carrie: They blanked out the name.
- Oh, they blanked it.
- They blanked out the name.
Xander: To keep it anonymous.
This is what we know, we know that she's female— Man 2: Right.
Xander: —we know that at the time of donation she was 33, she was a type O blood.
Man 2: 33.
Xander: That's all they tell you.
Man 2: Yeah, my goodness.
Xander: When, uh, they brought in the marrow— Man 2: Yeah.
Xander: —uh, one of the nurses pulled us aside— Man 2: Right.
- —and she said, uh, Okay, I'm not supposed to tell you this, but it did come in on Swiss Air, so it's, it's foreign.
Man 2: Yeah, it's gotta be.
Carrie: And there's some indentations too, I wonder, um, if that's her address or something.
Maybe we can get part of her name from... Xander: Oh yeah.
Well, look— - 'Cause look.
- Look, here, here, here.
Take a piece of paper.
Don't they do this in the, uh, in the movies where they put it on and they scratch over it?
Man 2: Yeah, let's try that.
Woman 2: Great.
Xander: Is that, that didn't do anything.
- Okay, well, let's look.
- But, but if you hold it at the right...
I see AUF.
Man 2: Auf, oh that's German.
- That's German.
- Yeah.
Xander: .DE.
Where's a .DE?
Man 2: Oh, well, that's Germany.
She's gotta be German then.
That's a lot.
- That's a pretty good start.
- Yeah, that's a lot.
Xander: I don't think we can go much further.
And then I don't know how we... Lise: Having done all they can to determine the donor's identity, the Denkes pass on the task to The Generations Project.
Meanwhile, they begin the process of filling out their own family trees.
Xander: If there's some genealogical society or expert here in town.
Let's see, there's a Dr. Alan McCool.
Man 2: Okay.
- That's a cool name.
Man 2: That is a very cool name.
- [chuckling] Xander: It's just over on Sand Point Way.
Woman 2: Oh, wow.
♪♪ Xander: Alan, thanks for meeting with us.
We really appreciate it.
So, we'll kinda break down our situation, where we're at.
Dr. McCool: Mm-hm.
Carrie: Finding out who the donor is is one, just one puzzle piece, but we also wanna find out, um, if there were any other, um, infant deaths during the time.
Trace it to... Xander: We know we both have the recessive gene, so to see kind of in our family wh— how far it goes back, if we can make connections and put a label on it, saying that Yeah, this looks like HLH.
Dr. McCool: Okay, that's great.
We can do several different things, um, but it starts with the basics, starting with each of you as the child of your parents— Xander: Okay.
Dr. McCool: —and we'll work you backwards in time as far as we can find records.
With luck, that will get you and your ancestors back across the pond into Germany somewhere and we can see then if those genealogies link up with your donors.
♪♪ And as soon as you get that information on the donor— Xander: Yeah.
Dr. McCool: —um, then send it over to me and we'll see what with the information we gain on your ancestries— Carrie: Great.
Dr. McCool: —and what we know about hers, we'll see if we can put it all together.
Xander: That's exciting, yeah.
Carrie: Thank you, yeah.
Dr. McCool: But it's gonna be— I wouldn't get my hopes up because it's gonna be a challenge.
Xander: Sure.
Dr. McCool: And we're gonna have to go back a long ways probably.
Xander: Okay.
Dr. McCool: And in earlier periods of history then sometimes infants might not have even been recorded, even on a tombstone, but at least occasionally they were and so we'll be able to find some information and whatever information's out there, we'll find, by George.
♪♪ Lise: Though it is difficult to find documentation of child mortalities, the Denkes do find some and mark each infant death with a red dot.
♪♪ - Total number was... - 38.
- 38.
17 on my side, 21 on yours of infant deaths.
I think we're at a point where we need to sort of take the next step, which... Carrie: Yeah, we can only go so far and I think we need a little bit more help genetically.
Xander: So we're getting the genealogy side.
Now we'll go switch over to the genetic side and hopefully find some, some info that way.
- Missing links.
- Yeah, some ties.
♪♪ Lise: Carrie and Xander visit the laboratories of Sorenson Genomics in Salt Lake City, Utah.
The lab staff will isolate specific strands of the Denkes' DNA that when compared with the unknown donor will determine their potential genetic relatedness.
Lars Mouritsen, Sorenson's chief scientific officer, welcomes them.
- Nice to meet you as well.
You've probably heard a little bit about us, but, um, it's great for you to come by today so you can have an opportunity to get to see our laboratory, get to see what happens to the DNA samples and, and hopefully collect some DNA samples from ya.
- Yeah, we're excited to— - Are you?
- —uh, give our DNA.
- Great.
Well, why don't we get right down to that?
- Awesome.
That'd be great.
Xander: Okay.
Lars: So all you're gonna do is take this cheek swab, rub it on the inside of your mouth, and the more abrasive you are, the better it will be.
'Kay, we're trying to collect cells and the cells from the inside of your mouth come off very easily, no liquid, no blood draw.
Xander: That's great.
Lars: No scary stuff like that.
So, now that you've— we've collected your samples— Xander: 'Kay.
Lars: —uh, we— I'd like to take you back in the laboratory and show you what would happen to these as, as we would take them through the laboratory and extract DNA and do DNA testing.
- Great.
Xander: We'll follow you.
Lars: Okay, great.
♪♪ So the DNA has been taken from the swab, it's been put into these blocks.
That block then goes through what's called a lysis step.
It frees up the DNA.
So if, if you can imagine... ♪♪ ♪♪ ♪♪ It's giving us a signal and telling us information about that person and creating the DNA fingerprint.
Do-does that make sense?
- Yeah, yeah, I think so.
Lise: Next, the Denkes meet with Eric Williams from NMDP, the National Marrow Donor Program.
Sorenson's and NMDP's interests are similar enough that researchers from both organizations sometimes conference about the future of their field.
Without NMDP and its relationship with the world-class Mayo Clinic, the Denkes' twin boys might have died from their rare genetic blood disorder.
Because of his part in NMDP's donor-finding research, Eric can draw some cursory conclusions about the Denkes' relatedness with their donor.
Xander: The doctors had said that a 10 out of 10 would be from a, a identical twin, would be a perfect match, so— Lars: Mm-hm.
- —we just assume that a 9 out of 10, it's gotta be close.
Lars: Right.
- Well, that's, that's not necessarily completely true.
You probably have an HLA ancestor that, that may be common.
We don't know that for sure, uh, and we can't tell for sure, but it's more likely.
Now, Keane and Ethan, they receive half of the genetics that match the donor.
They receive half from each of you.
Okay, so you would be only half-related to the donor.
Um, and we could find out more through more genetic tests as far as which of you is more related.
- And it's almost too much to take in, but, but, but you're saying that it's possible that we both could be related or connected or have common ancestry, right?
- To our donor?
- Right, but you would be more likely because you have more matching markers.
Carrie: But it doesn't mean that we're related— - Yeah, at the same time is there still a chance that we aren't at all because it's only a 9 out of 10?
Or how... Eric: No, there's a... ♪♪ Carrie: I'm trying to like, in my head, try to keep everything together.
There's a lot to process and when you hear certain things, you're not quite sure about, oh my gosh, okay, we are related, and then, oh, okay, we're not related.
Xander: I guess we're sort of left with... Carrie: More questions that need to be answered and... Xander: Seems like we have more research to do.
I think we'll go back home, we'll dig deeper into our family, see what else we can find.
Carrie: Go back to, you know, Alan McCool, see what he's found.
Xander: Because we want answers.
And we wanna know, are we related?
And we wanna find that connection with the children who could have had the same disease.
♪♪ Lise: As time has passed waiting for any word on their donor's name, the Denkes have continued their personal family trees back in their Seattle home.
♪♪ Several stories of child mortalities on their pedigrees have touched Carrie.
Carrie: There's an account of some family members coming across the sea and they lost a child coming across the sea.
[emotional] They had to bundle the baby as best they could in the whatever bedding that they had, and they had to just throw the baby overboard.
But the really, um, tragic... [sniffs] and heart-wrenching part of the story, um, is that they actually saw the baby gettin' eaten by sharks.
And I just— to think about what that would be like, you know, to go through something like that.
So, once they got to the United States from England, they lost another baby along the way, and they had to bury the baby under rocks.
Lise: Carrie has also found a story of lost children on Xander's pedigree.
Carrie: They had 12 children in total, but they lost 6 out of those 12 children.
And I just can't even... - I can't imagine.
Carrie: Losing all those children and thinking, you know, why me?
Or, you know, what did I do wrong?
So I tried to find out where the actual location was.
It's called Honeyville, Utah.
I've never heard of it.
I don't even know— Xander: I've never heard of it.
- —where, but apparently there's markers for the six children that— Xander: Did survive?
- —did survive and— but are buried there and as well as the parents, but there are no markers for the six children that passed once they came out West.
So, it'd be interesting to find out if it has any relation to HLH at all.
You know, it's incredible that we're not repeating the process.
[emotional] We've stopped the process.
Keane and Ethan could have had red dots next to their names so easily.
To look at their— our pedigree charts now and to not have to put those red dots is just incredible.
It's a blessing.
Lise: Several weeks later, the Denkes get a surprise message from The Generations Project.
[beep] Man 3: [voicemail] Denkes, this is Chris from the Generations Project.
Your donor has been located.
Her name is Monika, and we'd like to invite you to New York City to meet her.
♪♪ Carrie: Oh dear.
You're just so sleepy, huh?
Xander: 'Cause it's morning.
Do you know it's morning?
Carrie: A sunny day.
Xander: Guess what we're doing today.
Boy 1: Let's go to Toys 'R Us!
Carrie: [laughs] Xander: Remember who we're gonna meet?
We're gonna meet Monika today.
Your donor.
We're gonna go to a cool place and you're going to be able to make something special for her.
Carrie: You'll be able to paint.
Can we go to a very special place and make something for her?
Boy 1: Yeah.
Carrie: It's just for kids.
- [indistinct] Carrie: It's the children's museum.
Xander: The place we're gonna go to is just for kids.
Carrie: Do you wanna go there?
Boy 2: Yeah.
Carrie: Do you love it?
- Does that sound exciting?
Can, can you show me your excited face?
- Yeah.
Xander: Show me how excited you are.
Carrie: Good morning.
- Errrr.
- Whoa, that was kinda angry face.
Who are we gonna go see?
- Monika!
- Monika.
Keane, who are we gonna go see?
- Um, Monika.
- Monika.
But first we're gonna go to the kid's place and make her a present.
That sound good?
♪♪ ♪♪ ♪♪ ♪♪ ♪♪ Carrie: I'm excited, um, but I'm a little nervous about how my emotions are gonna play out and how they're going to hold up.
Xander: This might be that missing piece that really puts the lid on the HLH experience and going through this.
To really say, hey, this chapter is over, and I can, I can move on to the next chapter.
We're ready.
Carrie: We're ready.
Xander: Yeah.
Can't wait.
♪♪ Just wait.
- It's very exciting.
- She's gonna come.
- She's coming.
Xander: [gasps] There she is.
Carrie: There she is.
- Hi.
Xander: Hi, how are you?
Monika: Fine, thanks.
Xander: Thank you.
Carrie: Hi.
Monika: Hi Ethan.
Ethan: Thank you.
Monika: Hi.
Ethan: Thank you.
Keane: Thank you for present.
- [laughs] Oh, you're so sweet.
Xander: Can we give our presents to Monika?
Carrie: Can we give our presents to Monika?
- What do you wanna say?
- You paint that, for me?
Oh, that's great.
- Tell her what's in there.
- Thank you.
- You're welcome.
Ethan: Thank you.
Monika: That's great.
Xander: What are these?
- Heart.
- Hearts, just for her.
- Very nice.
- Oh, and Ethan, you love those.
What's this?
- Mushroom.
Xander: Mushrooms.
He wanted to draw a mushroom for you, huh?
Keane: I drawed a, a astronaut and, a-and a rocket!
- And a rocket.
- Do you like it?
Do you, do you want to be a astronaut?
- Yeah.
Monika: Yeah.
- It's my astronaut!
- And what about up here?
What did, what did we draw up there?
- Uh, a heart.
Xander: A heart.
Keane: That bleeding on there.
Monika: Ah, nice.
- [laughter] - Some blood because that's what Monika gave you, right?
Do we have something else for her?
Monika: What's that?
Xander: This is just— Monika: Thank you.
Xander: —a little present.
All: [laughter] - Thank you very much.
Carrie: You're welcome.
Xander: So there are two pieces that come together to form a heart— Monika: That's nice.
Xander: —and so we thought of our boys, yeah.
- Oh, that's nice, very, very... - Yeah, so, thank you.
Monika: Thank you.
Carrie: We also made a book about kind of our journey, um.
Monika: Can I?
- Yeah.
Monika: Have a look at it.
- It was just— Monika: Oh, so sweet.
Carrie: —a long journey and a long process and, and you were a big part of that without really being there.
Um, so, this will kind of let you see, you know, what happened and when they were diagnosed and the transplant process and kinda help you see what it was like and, and to put you there.
So, why did you wanna become a donor?
What, like, what made you want to do this?
Monika: Uh, I've registrated, um, in 1992— - Oh, wow.
Moniak: —because there was a student in our high school who has become leukemia, and we have a donation drive for him, but at that time there weren't enough people registrated, only a few went.
He had nearly no chance to find a match.
And I thought at this time, if I had the chance to, to help someone on this way, I, I must do it.
- Wow.
Carrie: I wish everyone could be like you.
All: [laugh] Xander: Yeah, I know.
If everyone was like you.
She's so connected to us and yet a complete stranger, so it's feeling this, this inseparable connection and not knowing exactly how to go about it, it was... - And, you know, the right words to say because this person, you know, [emotional] saved our boys.
- The fact that she was able to put together all of this, her genealogy, her, her swabbing, her genetics that we're now able to take that next step to be able to, to find out whether or not.
Her... wo— her bir... - [emotional] Sorry.
- Her bir— her birthday's the same as Carrie's.
Carrie: [inhales] [choked laugh] [sniffs] I didn't think to look at it till now.
I can't believe it.
It's amazing.
[chuckles] - Wow.
I mean, it's, it's-- I-- just feels so much more than coincidence.
Carrie: [sniffs] ♪♪ [waves lapping] Lise: To determine their potential relatedness, the Denkes pass along Monika's pedigree to genealogist Alan McCool and her genetic samples to NMDP for analysis.
Several weeks later they receive the results of the analysis and decide to visit Germany to open the results with Monika.
Xander: A lot has happened.
We got back from New York, Monika had given us her swabs, her DNA, and her genealogy.
Carrie: We took it to Sorenson labs to find out if we were related and... - And this is it.
Carrie: Drumroll.
Yeah, we wanna open it to find out if we're related or not.
Xander: I really wanna open it but taking it to Monika and opening it with her I think would be the best thing that we could do, so.
It's almost like, uh, giving a Christmas present to somebody and not wrapping it, maybe playing with it a little bit and then giving it to them.
- Yeah.
- Whereas the joy of opening a gift really is on both sides, so I think when she finds out the answer and we find it out at the same time, we both rejoice together whatever it is because we've been through so much on this journey already.
I think it's definitely worth it to wait a little bit longer.
♪♪ ♪♪ Lise: Based on a lead from Alan McCool about Carrie's ancestors, Carl Meyers and Anna Jacobsen, the Denkes also decide to add Denmark to their itinerary.
They wonder if the Meyers family lost children to HLH in Ledøje, close to the capital city of Copenhagen.
♪♪ At the town church of Ledøje, church sacristan Jens Larsen has arranged for the Denkes to review the children's death certificates.
♪♪ Xander: So these are copies of the actual records?
Jens: Yes, yes.
Carrie: So we could actually learn why they died.
Jens: Yes.
Sometimes you, you can although sometimes you can't.
Oh and he died on thi— Carrie: 23rd of June, and that was when they had the ceremony.
Jens: Yeah, in the church [indistinct].
Carrie: Okay.
Xander: So this was actually here in this church?
Jens: Yes.
- Where they had the funeral services?
- Wow.
- Yes.
Yeah.
Lise: The Denkes find that Carrie's ancestors, Carl and Anna Meyers, lost three young boys in a row, each before the age of five.
The first son, Carl, died of unknown causes.
Little Jacob died from whooping cough.
And another son named Carl choked to death at the age of four from stroba fossa, a complication of the respiratory system.
Carrie: Is it possible to go and see the gravesites?
- Yes, yes, yeah, of course.
Carrie: It's neat to be able to mourn with them now and to be able [emotional] to express our sympathy... when we could have been in that same situation, you know?
It's peace and it's a love.
It's a deep love.
♪♪ ♪♪ ♪♪ ♪♪ I think we've both gone up and down the same path at least three times.
Xander: We were looking for— it was for a Meyers, or even a Jacobson, and I didn't find anything— Carrie: Yeah, nothing.
Xander: —so that has to make me think that there are no markers.
Carrie: And that makes me feel... [emotional] sad for them.
It would be really great to be able to do something for them, you know, to make a special memorial for them.
That's what I'd like to do.
I'd just like to make— I'd like to make a place for them to rest, a final resting place.
♪♪ ♪♪ ♪♪ [birds chirping] Lise: To learn more about the death of the Meyers' sons, Carrie and Xander visit the Frilandsmuseet in Denmark's capital city of Copenhagen.
The Frilandsmuseet is the world's oldest open-air museum and has architectural recreations from over 300 years of Danish history.
It is curated by world-class historians and anthropologists.
Museum docent Inga Petersen meets with the Denkes and explains a recreation of a mid-19th century Ledøje farmhouse.
Inga: So, so, the people lived in here and you have the farm buildings 'round here, the barn, the horse, and where you keep your corn and hay and so on.
There would have been 10 farmers or crofters.
Carrie: Okay.
- Depending on how, uh, where it was in the society.
Carrie: Okay.
Inga: By working on this farm, you got to keep some of your-- the, the things you had.
Carrie: So, I wanted to ask you a little bit about, um, my family and especially, um, some of the boys that died.
So when Carl died, um, his symptoms were, um, restricted throat— - Yeah.
- —and there was-- the other Carl was whooping cough.
And one of the things we're trying to find out is is that any relation to what our boys had genetically?
Um, we have this gene called HLH that's been passed down.
- Yes.
- Is that something that could have been linked to that kind of symptom, HLH?
Inga: Oh yes.
- The genetic disease.
Inga: I should think.
- Wow.
Inga: And you, you would have found the nearest symptom and described it and used that when you wrote down the reason why they die.
- Right.
So it could possibly have been linked to... - Oh yes.
- ...a genetic disease.
Inga: I should think.
Carrie: Wow.
Lise: Inga further justifies her conclusions by explain that HLH can cause the organs of an inflicted child to swell and constrict the lungs, causing any number of respiratory complications.
A diagnosis of whooping cough or stroba fossa could have been a best guess by attending physicians.
In addition, infant mortality rates in Denmark when the Meyers lived in Ledøje were historically low, so the fact that they lost three children around the same age is a strong indication that something genetically inherited caused their deaths, rather than something environmental.
This knowledge of Danish history together with the recreations of how the Meyers would have lived reminds Carrie of their experience at Ledøje church.
- When we went to the gravesites, we couldn't find-- or the church, we couldn't find their headstones.
- Danish churches, you remove the headstones after a period if the family isn't there and if nobody pays for the— - Oh, interesting.
- —the grave.
Carrie: Would they have put somebody else in their place?
- Yeah.
- They would have, wow.
So somebody else could be buried over them.
- Yeah.
- Wow.
- And what do they— with those old headstones, do they just— what, what, uh— - I don't really know.
- —is there anything they do with them?
- Yeah.
- They disappear.
- Yeah.
Wow.
Interesting.
So they could have actually had a proper burial?
- Yes.
- And we just don't know— - Yeah.
- —'cause the family isn't here anymore.
- When the— in this book, they had a proper burial.
- It's nice to hear that.
- Yeah, that that's what they did.
Inga: But it's so long ago— - Yeah.
- —so the, the headstone is gone.
- It's a relief, it's a relief.
- But they are somewhere in the graveyard still.
[chuckles] - That's neat.
To know that they had a proper burial, that they had all of that is just, it's a blessing.
Well, and it would still be really great, I think, to put a marker there for them.
Even if it's one indicating all of them that had passed.
Xander: And then coming here and, and really digging into our family and, and connecting with them, learning their stories, and wanting to do something for our family here, uh, to remember them, uh, we were talking about it and we just thought it would be, it would really be a nice gift if we could somehow do that for Monika, uh, in Germany with her family.
Carrie: I think she'll love it.
That part of history and that piece of information, it's something she may not even know about.
To present that to her would just, I think, mean a lot.
♪♪ Lise: In pursuit of this gift, the Denkes review Monika's pedigree and find a lead in Borgholz, Germany.
At St. Marien's Catholic church in Borgholz, the Denkes look for the graves of the children of Monika's ancestors, Caspar and Elisabeth Kamen.
Records suggest that as many as six of their children died at young ages.
♪♪ Both: We didn't find anything.
Carrie: Yeah, nothing.
Xander: It's the same thing that we saw in Copenhagen, the same thing in Honeyville.
It's, uh, it's a little frustrating.
We've talked about it a little bit while we were in Copenhagen.
We want to do something.
It'd be nice if we could establish something that is lasting that will— - Serve as a reminder Xander: —be in memory of the children who, who were lost, and who aren't remembered in any way.
I mean, we've found nothing.
Carrie: Well, not just for our families too, because it's not just our families.
Um, it's not just Xander's, mine, Monika's.
You know, other, other children are lost too.
And, um, whatever we can do for these children, it would be really amazing.
Lise: With the permission and support of St. Marien's, Carrie and Xander arrange for the placement of a small glass memorial on the church grounds for all children who died unremembered.
Carrie and Xander drive to Monika's town of Delbrück.
They are finally bringing the scientific analysis that could tell whether Monika and the Denkes are related.
Carrie: We're on our way to find out if we're related or not.
There's a little bit of pressure because we want so desperately to be related.
- Yeah, I mean it would just be the perfect end to kinda the perfect story.
- Hi.
- Hello, hi.
- Nice to meet you.
- How are you?
Good to see you.
Carrie: Hi.
- Hi Carrie.
Carrie: [muffled] Monika.
Good to see you again.
Xander: We started this whole long journey because we had two main questions.
Are we related through genealogy?
And, because of the 9 out of 10 match, are we related genetically?
Is— are those connected?
We did get the results back.
We have both the genealogy side and then we have the DNA results through the genetic testing.
Uh, we've waited all this time to open it.
Do you wanna?
- Yes.
Let's do it.
Let's do it.
Ready?
Okay, alright.
♪♪ "Dear Denkes, "I was unable to find any one common ancestor "that two or more of you share, "but I did find an interesting similarity "between Monika's and Xander's pedigrees.
"One of Monika's family lines is the Fischer line that lived in Westfalen."
Monika: Nordrhein-Westfalen.
- Okay.
- Yes.
- "For many generations.
"I found a lot of documentation "to prove this beyond doubt.
"Xander also has a line of Fischer ancestors who may have lived as little as 130 kilometers away."
Xander: So maybe if you have Fischer side and I have a Fischer side, maybe at least they were friends or, or connected somehow.
- [laughter] - Cousins, I don't know.
Xander: So, the real answer would be... Carrie: The DNA.
Xander: Yeah.
Carrie: So let's do the DNA.
Xander: I want to.
Carrie: Yeah, alright.
♪♪ "Dear Carrie, Monika, and Xander.
"There is a likelihood "that Xander and Monika are distantly related "because they share several genetic markers "that are unique to such an extent "that sharing them "suggests a high probability of relatedness.
"Carrie, there is also an interesting chance "that you too are related to Monika.
"One of your specific DNA markers "is a mismatch with Monika's marker.
"The mismatch ironically proves "that you are related, however distantly."
Monika: [chuckling] Xander: So, that's the answer.
You are related.
♪♪ There's more too.
Uh, we've seen something, uh, common and something tragic.
You can see all of the red dots.
Monika: Yes.
Xander: These are all children who died under the age of five, all on mine and all on Carrie's, and we've also found on your side some children who passed away at a young age.
Monika: The red points are six children who died?
Monika: [speaking German] Xander: We went to the church where they should be, and there are no markers.
Monika: Mm-hm.
- There are no markers.
So, we've made a special, uh, plaque, a special memorial— Monika: Mm-hm.
- —for the children who have gone, uh, unmarked and who are, who are no longer remembered, who don't have a place where they're remembered.
And so we wanted to go with you, if you'd like to come with us, to that church and we'd like to place it there together to remember y-your family and those children who died and, and other children who have passed.
Monika: [quietly] I want to go with you.
- [laughter] - Good, good.
We're so glad.
Xander: Yeah.
♪♪ Lise: In the churchyard of St. Marien's in Monika's ancestral town of Borgholz, the Denke and the Rasche families place a memorial plaque written in German and saying, "In remembrance "of all those who died in childhood "and were forgotten by history but live on in our hearts."
♪♪ You got your happy ending.
Xander: We did.
- [laughs] You're both teary, I'm teary.
Do you feel somehow that your related-relatedness to Monika is sort of predestined, or some part of a bigger plan?
Carrie: You'd like to hope so, and I think for us, we believe that it— that's the case.
You know, you go through all of this and, um, it's a lot, and then to finally meet somebody that you're related to, you have to know that there's a, a bigger cause, that there's a bigger picture, you know, that there's something behind it than just coincidence.
- Yeah.
Family, you know, that we— I think we already wanted her to be part of our family because of what she did for our boys, the sacrifice she made donating her marrow, but then to connect that we're related just, it just felt right, it just felt like this was the only way that it could have happened and it was, it was meant to be.
Lise: Absolutely.
Carrie: Well, and when our, our first donor fell through, looking back of course— Lise: Mm.
- —and then now knowing that we're related to Monika, you can't help but wonder, you know, would that first donor have been related too?
Maybe, probably not though, you know.
Lise: Right.
- I mean, we don't know, but we— Lise: This is so rare in and of itself.
Carrie: Yeah.
- Um, you found a lot of red dots, children who passed before the age of five in your— in both of your families and in Monika's as well.
What did that give you?
Or what did that teach you?
- I think, uh, I think a deeper sense of gratitude.
You know, I think, uh, at one point Carrie said that, you know, we could have put two more red dots— - Yeah.
- —next to our boys, but we didn't, and just how miraculous that was.
And I— and it also made us, uh, really have an appreciation for those families and what they went through, losing those children— Carrie: Mm-hm.
- —and wanting to do something for them, I mean.
- And carrying on.
- Yeah.
- You know, they, after they lost the children, they had to pick up and carry on.
And, you know, we've kind of felt the same thing with going through this.
We didn't lose any children, thankfully, but we had to pick up and we had to keep going.
Lise: Right.
- And I think that's just human nature, you know.
Lise: Absolutely.
I-I don't want to miss out asking how the boys are and what their future medical situation is.
Carrie: Good.
- What is the plan?
Xander: They're doing really well.
Carrie: The doctor said they're out of the woods, the transplant doctor, which is amazing to hear.
- Amazing.
- Fantastic.
And what is your continued relationship with Monika, have you stayed in touch?
Xander: Yeah, we're emailing, uh, back and forth and she wants to come visit us— Lise: Very good.
- —in Seattle and we wanna go back and see her and spend some more time in Germany.
Uh, yeah, you know... - We get post cards.
We send postcards.
- Well, and, uh, was it Monika's dad who, uh, who looked at them and, and said they looked like, uh— Both: Sisters.
Xander: You know— Lise: Oh, I saw that!
- —he wanted to call her a daughter.
I mean, he really latched on to you, I remember there was a real sense of... - There was a connection.
- ...a real sense of family.
- Which was— it was neat.
Lise: That's so touching.
I heard that you have said about Monika that she is another mother to your sons.
Feel that way still?
- [emotional] Yeah, 100%.
You know, how can you not, when you go through something like this, and you give of yourself to make a child and then there is an incomplete part of that child because of this disease and then somebody else comes in and they give of themselves to complete them again.
You know, it is just— is such a miracle.
It's such a miracle.
- They really got a— they really got a second chance because, uh, we've seen so many, uh, with the disease, HLH, who don't make it, and our boys got that second chance that she was able to provide, so.
Lise: And you got your happy ending.
- And we got our happy ending.
- Perfect ending.
- And you shared it with us.
Thank you both so much for sharing this story.
- Thank you.
Carrie: Thank you for having us.
- Absolutely.
This conversation continues on our website, and if you want information on how you can become a marrow donor, please check us out at byutv.org.
I'm Lise Simms and I look forward to seeing you on the next Generations Project.
♪♪ ♪♪ ♪♪
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