Finding Hope Amidst Long Q-T Syndrome: Jackie Renfrow's Journey

Imagine living in a family where sudden deaths were a tragic norm. That's the reality heart mom Jackie Renford faced before the fateful identification of Long Q-T Syndrome, a genetic heart condition, in her family. Her misdiagnosis and the subsequent loss of her son and daughter have inspired her to become an advocate for early detection and treatment of this life-threatening condition. Journey with us as she shares her family's heart-wrenching story and opens up about the ongoing battle with Long Q-T Syndrome.

Jackie's experiences with Long QT Syndrome open up a world that is often misunderstood. How do you navigate through life when you and multiple family members are affected by a genetic heart condition? Jackie gives us a first-hand account of the symptoms, diagnosis, and treatment of Long Q-T Syndrome, as well as the emotional toll it takes. She emphasizes the importance of regular medical check-ups, cautious medication use, and a proper diagnosis. Find out how her family is rallying around this, the importance of comprehensive medical care, and how they're facing the realities and challenges of living with Long QT Syndrome.

We may not choose the trials we face, but we can choose to find blessings amidst adversity. In the spirit of finding light in the darkness, I share my own experiences of living with a congenital heart defect and the support that has been instrumental in my journey. As we approach the holiday season, I encourage you to join us in providing free programming for the congenital heart defect and bereaved communities. It's through our stories that we realize we are not alone, and it's in our blessings that we find hope. Join us for a profound understanding of Long QT Syndrome and a message of resilience and hope.

Transcript

Speaker 1: 0:00

It definitely gives you a new lease on life and it's not a death sentence. If you do have this, it's treatable, but it could be a death sentence if it's not treated.

Speaker 2: 0:14

Welcome to Heart with Anna. I am Anna Jaworski and your host. I'm also a heart mom to an adult who was born with a single ventricle heart in 1994. This is the reason I am the host of your program.

Speaker 2: 0:27

Jackie Renford thought her family had a history of epilepsy. After losing her son Jimmy in 2000 and her daughter Chrissy in 2002, she was desperate to find a way to save her two baby granddaughters. It wasn't until her own mother started fainting and having irregular heartbeats that she finally got answers. Emergency doctors performed an electrocardiogram or an ECG and promptly diagnosed her with Long QT syndrome. Jackie and her granddaughters Alexis and Jessica also had an ECG and they were diagnosed with the syndrome as well. Jackie has since started a chapter of the Sudden Cardiac Arrest Association in Indian apolis. She works with scientists, doctors, parents and others to promote awareness of sudden cardiac arrest and access to defibrillation and treatment. In honor of her children and grandchildren, she works to spread awareness of Long QT syndrome in order to help other families prevent the loss of their loved ones. My longtime listeners will remember Jackie from her other appearances on Heart to Heart with Anna, especially her most recent appearance when she talked about Long QT syndrome, genetics and pregnancy Welcome back to Heart with Anna Jackie.

Speaker 1: 1:48

Hi Anna. Thank you so much for having me back. I have been looking forward to this. I'm hoping that we can get the word out there and everybody takes the time to listen to this podcast, because it can save a life.

Speaker 2: 2:02

Exactly that's what we're all about is educating and firing and powering. If we could save a life and a reckoning, that would be amazing.

Speaker 1: 2:12

Yes, absolutely.

Speaker 2: 2:14

But before we get into this episode, I want to express my sorrow at the loss of your mom. She was such an amazing woman and I'm so glad I got a chance to meet her on the Breach, but Still Me podcast.

Speaker 1: 2:27

Thank you for having her. She really enjoyed sharing our story with everyone and she was a lot like me she wanted to spread the word in hopes of saving others. Ironically, she didn't pass from the Long QT. She passed because she took a bad fall and couldn't recover, but she was 94 years old. It's a story of inspiration to people that do have this illness that they can continue to live a long life if treated.

Speaker 2: 2:55

Yes, wow, 94. There are a lot of people who don't have Long QT syndrome, who don't make it that long.

Speaker 1: 3:02

Absolutely. My son passed at 22 and my daughter at 21.

Speaker 2: 3:07

A lot of your family members passed far too young as well, didn't they?

Speaker 1: 3:12

Correct. We were tracking it back to the 1930s, around the Great Depression. When my mom was only two years old, my grandfather and my grandma took her to the Fresh Friars and that night he went to bed and went to sleep and my grandma woke up he had already passed away and they said he had some like suffocating spells is what they called it back then. I'm guessing, from what I know now and having this for my entire life, that it was the Long QT and he probably was having some rapid heartbeat and it probably scared him.

Speaker 2: 3:49

Yeah, that would scare me too. Oh, my goodness. I said like growing up in a family where family members just suddenly died.

Speaker 1: 3:57

As a child. I think it was just part of my life. I didn't know any different, if that makes any sense, because it was always something. It was always startling. No matter when somebody's suffering a grand mal, seizure, it is terrifying. So anybody out there that has pain spells the grand mal, seizures, the rapid heartbeat, family history of sudden death and explained. Please take the time to listen to this show because it could truly help someone.

Speaker 2: 4:26

So you're saying grand mal seizures. So were the seizures a result of the Long QT arrhythmia?

Speaker 1: 4:32

Yes, it was. What it does is when our heart starts an arrhythmia, the heart starts quivering, Therefore it's no longer pumping the blood to the brain and it cuts off the oxygen. So I remember as a child when I had my first episode. I was five or six years old and I was running down the street and Then all I remember was the next thing I knew I had fallen over in a rose bush having a granimal seizure.

Speaker 2: 4:59

Oh my gosh, so the epilepsy wasn't an unreasonable diagnosis then? Because you did?

Speaker 1: 5:09

have seizures because that's all the facts they probably had at that time, because Long QT wasn't discovered till 1981. With a doctor, vincent and I did research years ago. But it seems like his wife had a strange family history, similar to mine and him being a doctor. He started doing his own research and that's where he discovered the QT intervals in her family were longer than most. Interesting yeah, and that was the year my daughter was born.

Speaker 2: 5:40

Ironically, Wow, okay, so you were already an adult.

Speaker 1: 5:45

Oh, yes, when it was found in me. Yes, the thing was about 2003 is when they discovered the long QT, my Christie passed and, oh three, we were literally ten months from saving my daughter. So you got to think we had separate from these my entire life, my whole family, and long before I was even born. And Then they find it in me and I was literally months from saving my child, in two years, from saving my son. If we would have no, they could have had a defibrillator put in and been treated with beta blockers and know what medications to take or what not to take, and that just absolutely makes a world of difference.

Speaker 2: 6:27

Yeah, it absolutely does. So was having that epilepsy Diagnosis? Was that scary for you? Because that seems scary in and of itself. And the other thing I'm wondering is did having that epilepsy Diagnosis, did that mean that you had certain medications, and did those medications mask the Long QT syndrome?

Speaker 1: 6:53

I've done my own research again and I'm no medical professional here, but we were treated with a drug called phenobarbretol, which that is not a tranquilizer but it kind of relaxes you, and I feel like that probably made the difference in our heart. When we went to put my kids on medication, they told me they didn't want to put them on there because it does cause swelling of the gums, so they put them on a medication called tanker. At all we were on different types of medication and and that had to been why most of us had not passed away. Years ago, after I'd given birth, my heart was beating so fast.

Speaker 1: 7:36

My daughter was probably only two or three months and I had suffered a horrible seizure and I'm pretty sure I was near death at that point. I remember it was awful Having a seizure and my son began yelling my name he was three years old and him yelling. Mommy pulled me out of it, but my heart was beating so fast. The doctors had no clue why, so they had increased my phenobarbretol, probably about three or four times More than what I should be taking, and then I quit having episodes. So that's the only thing I can think of.

Speaker 2: 8:11

Had a medication, so the medication actually probably did save your life, even though it wasn't the proper medication for what was really going on.

Speaker 1: 8:21

No, because, see, you got to remember. You're talking about 1981 and dr Vincent was probably in the process of discovering this, so we are ways out for it, even being known to people that the heart problems can show signs similar to epilepsy, I never dreamed we had heart trouble.

Speaker 2: 8:52

And Tonight Forever by the Baby Blue Sound Collective. I think what I love so much about this CD is that some of the songs were inspired by the patients.

Speaker 3: 9:03

Many listeners will understand many of the different songs and what they've been inspired by. Our new album will be available on iTunes, Amazoncom, Spotify.

Speaker 2: 9:13

I love the fact that the proceeds from this CD are actually going to help those with congenital heart effects.

Speaker 4: 9:20

Enjoy the music.

Speaker 2: 9:21

And Tonight Forever. This content is not intended to be a substitute for professional medical advice, diagnosis or treatment. The opinions expressed in the podcast are not those of Heart Unite the Globe, but of the hosts and guests, and are intended to spark discussion about issues pertaining to congenital heart disease or bereavement.

Speaker 4: 9:47

You are listening to Heart to Heart with Anna. If you have a question or comment that you would like to address on our show, please send an email to Anna Jaworski at Anna at hearttoheartwithannacom. That's Anna at hearttoheartwithannacom. Now back to Heart to Heart with Anna.

Speaker 2: 10:05

Jackie, before the break we were talking about growing up in a family diagnosed with epilepsy and knowing that your grandfather died very young and we learned in the opening that your mom was diagnosed correctly and that spurred more family members into being tested and discovering that they also had lung QT syndrome, including you not epilepsy.

Speaker 1: 10:28

That's correct. Mom always had anxiety. I think she did have anxiety, but a lot of it was showing itself in the way of the heart. Mom was always so scared of having seizures rightfully, because, honestly, I can't even imagine what she went through having seizures in the 40s and 50s because medical help wasn't like it is today.

Speaker 2: 10:48

And she probably wasn't on any medication right, that's correct.

Speaker 1: 10:52

Yeah, just once again, the seizure medication. They did put mom on nerve medication, which probably helped her more than anything, and she would always talk about going to this doctor and she was having horrible seizures after she had given birth to my brother in 1950. And she said this doctor I think his name was Dr Reisler gave her a shot of vitamin B12. I believe that's the one that's supposed to help soothe the nerves and she says she felt instant relief. So I don't know what the connection could be with that, but I do remember her telling me that they had even given mom blood transfusions. Oh, wow, yeah, can you imagine I can just see going back in time, laying there in this young woman just giving birth, just having one seizure after another, and so they were just, I think, probably grasping at strolls because she's about 21 or 22 years old, so they just started giving her blood transfusions.

Speaker 2: 11:52

No wonder why she was so scared. It had anxiety.

Speaker 1: 11:56

Yeah, and we all have a touch of anxiety. There's something connected with that, but I think maybe it's just experiencing the horrible seizures and it can be a feigning spell as well. We've seen that where we just pass out. It doesn't always have to be a granimal seizure. I would just recommend to people, especially if their kids are active and forced to, please get them the proper physical. You need to make sure. If you have a history of sudden death, please make sure you get your kids' hearts checked. It's so important.

Speaker 2: 12:27

Yeah, it really is. How has the new diagnosis affected the new generations of your family and how many members of your family Jackie actually have long QT syndrome.

Speaker 1: 12:40

So I would say eight to nine If we include everyone that's already passed or getting up there in the double digits. We had a peasant that even went to sleep. She had horrible seizures and she went to bed. She had four kids at home. Her husband wasn't at work. He came home and found her deceased. So she had probably had a horrible seizure and she had cardiac arrest is what happened. But this was probably in the 70s, I believe. We've had a lot of sudden death. We had another cousin who went to his basement to work out. He went upstairs and sat down and passed away. That definitely is a symptom of long QT.

Speaker 2: 13:22

Okay, so probably double digit numbers of your family have been affected and currently there are eight members of your family who have been diagnosed. Are there?

Speaker 1: 13:32

other family members. Yes, living. If we want to count the living, I would say we probably have six or seven. At this point I'd be still living.

Speaker 2: 13:42

And do you have family members who you suspect may have long QT but they haven't gone for?

Speaker 1: 13:49

testing. I do think that their distant relatives. After I received our genetic testing, they sent me a letter so I could send out to family members that they possibly need to be checked for this. But they would say things like this is the first I've heard of that and I just shared the information that was given to me because we could possibly have that same gene. They never really contacted me over it, but I did. My part is sharing it with them. Yeah, I definitely think it's still out there. I'm not sure, maybe a scare zone and they don't want to talk about it, but it's out there and it's happening. We have one side of the family. They just won't admit that it come from that side. And back then when you had a seizure, you had a fit and it was embarrassing. Sure it was different than it is today. How old were your?

Speaker 2: 14:41

granddaughters when you discovered that the long QT syndrome gene might be part of your family, and how did they react to being tested?

Speaker 1: 14:52

Alexis was only five so she was fine with it. Jessica was two. They had done several EKGs on Jessica because she was only two and it really didn't start showing a lot until she was five. Now my granddaughter Alexis she had her baby boy and he does have long QT. He was the youngest, most in our family, at two days old.

Speaker 3: 15:18

Wow.

Speaker 1: 15:20

They whisked him up and took him to the NICU. My granddaughter had reached out to me and she said his EKG isn't looking good, grandma, and I'm thinking, oh boy, now she's getting ready to give birth again. So let's all pray that gene is not going to be carried on through him. But we will see, they'll be ready. That's amazing. Now, poor little baby boy has been on it for his whole life, since he's been two days old.

Speaker 2: 15:46

Wow, do you feel that now that your family has a proper diagnosis, your family has a new lease on life?

Speaker 1: 15:54

Absolutely yeah, because you can live your life normally. My granddaughter, alexis, was a color guard. She was very busy, always dancing, but she had a heart defibrillator so in the event she did go down, she would be revived. Yeah, it definitely gives you a new lease on life and it's not a death sentence. If you do have this, it's treatable, but it could be a death sentence if it's not treated, which your family knows all too well.

Speaker 1: 16:23

Exactly, and all you have to do is follow everything. When you go to your pharmacy, you give them all your medical history. We have a long QT and it's in their system, I'm sure. But then we can't take just antibiotic. We can only take maybe the penicillin, because the other antibiotics can start our heart into an arrhythmia. We can't take Benadryl, Even if we take something over the counter. We get a package, we take it up to the pharmacist and ask if this is safe with long QT syndrome.

Speaker 2: 16:55

Okay, so now that you have defibrillator, is that right?

Speaker 1: 16:59

or a pacemaker, which we have. We have a defibrillator and it is a life-saving device. So if you go into cardiac arrest it's going to shock your heart back into rhythm. But it has a pacemaker in there that's going to pace your heart back into a normal rhythm. So if it drops real low for being a shock, it's going to try to put you back into rhythm. It also records any activity you have. It's amazing device, very costly, but it's amazing.

Speaker 2: 17:28

I'm sure it is costly, but your insurance should cover that right.

Speaker 1: 17:33

Yeah, depending on your insurance. But yes, it covers it. You just have to make sure it's deductible. But, rhett, he doesn't have one because they do not want to put a defibrillator in you unless they absolutely have to. When you're small, my granddaughters did not receive it until they were 12 or 13 years old, because the body changes so fast and they have to put it in a place to protect it, because you know how rough kids are.

Speaker 2: 18:00

So I guess they weren't as worried about the children having sudden cardiac arrest as they were when you get older, because it does sound like most of the people passed as adults, not as children.

Speaker 1: 18:15

That's true. My granddaughter, alexis, had a horrible episode. She needed a defibrillator place and her mom didn't want her to have it put in because she wanted her to be active in golf, which was a horrible decision. So Alexis started having seizures and once her heart started in a rhythm yes, she ended that being at Riley Hospital for well over a week. I had gotten up there. One day she sets up in bed. Her eyes roll back in her head. They had to call a code blue. So you can imagine where I was. At that point. I thought I cannot do this. But you need to get that defibrillator in your body. I don't care what activity there is. That is a life-saving device and that needs to go in as soon as you get it put in.

Speaker 2: 19:00

So is having a defibrillator pacemaker, which is what it sounds like you all have. Is that prohibitive for playing golf or other sports?

Speaker 1: 19:10

You can play golf.

Speaker 2: 19:11

I think it's competitive sports they want you to stay away from because they don't want it to get hit, like with football or soccer or something like that. Exactly, yes, got it.

Speaker 1: 19:21

I feel like there's certain activities that my grandson is going to be able to do once he gets a little older. We're not sure. Of course that will go through the physician, and I know Alexa, since she had that horrible event. There's no way she's going to ever allow her son to have the experiences that she unfortunately had to endure.

Speaker 3: 19:42

Anna Jaworski has written several books to empower the congenital heart defect, or CHD, community. The books can be found at amazoncom or at her website, wwwbabyheartspresscom. Her best seller is the Heart of a Mother, an anthology of stories written by women for women in the CHD community, and as other books, my Brother Needs an Operation, the Heart of a Father and Hypoplastic Left Heart Syndrome. A handbook for parents will help you understand that you are not alone. Visit babyheartspresscom to find out more.

Speaker 4: 20:24

Heart to Heart with Anna is a presentation of Hearts Unite the Globe and is part of the Hugg Podcast Network. Hearts Unite the Globe is a non-profit organization devoted to providing resources to the congenital heart defect community to uplift, empower and enrich the lives of our community members. If you would like access to free resources pertaining to the CHD community, please visit our website at wwwcongenitalheartdefectscom for information about CHD, the hospitals that treat children with CHD, summer camps for CHD survivors and much, much more.

Speaker 2: 20:58

In our most recent episode we talked about pregnancy and lung QT syndrome, so can you tell us about some of the newest additions to your family?

Speaker 1: 21:08

Absolutely, anna. I'm so happy to say even though I have lost my two children. They gave me a granddaughter each and those granddaughters are giving me great-grandkids. I have my precious little Armani, my granddaughter Jessica has, and then Alexis. She has the most adorable goat-in-hair boy. I can't stand it. He's so cute because my son had goat-in-hair and I had been wanting my goat-in-hair boy and then she's expecting another one in just a few weeks, so it's very exciting.

Speaker 2: 21:42

That is so exciting.

Speaker 1: 21:44

Oh my gosh, I will have three great-grandkids and then my other granddaughter. She's expecting an April, so we're very excited.

Speaker 2: 21:52

Wow, okay, so you have Jessica, who has lung QT, and she was Chrissy's.

Speaker 1: 22:00

That was Chrissy's daughter. Yes, and she has her daughter. She's just as sweet as could be, of course. And then we have Alexis. That's my son Jimmy's daughter, and she has Rhett, and he's getting ready to turn two years old here next week. And then we are expecting another baby, casey, maybe after Christmas, but he'll let us know when he's coming.

Speaker 2: 22:27

Yeah, babies have their own timetables, don't they?

Speaker 3: 22:30

Yes.

Speaker 2: 22:31

And they're children who have also given you grandbabies.

Speaker 1: 22:34

My husband's granddaughter's expecting her first baby in April, so we're very excited. We just have babies everywhere.

Speaker 2: 22:41

Oh my goodness, that is so exciting, especially around the holidays.

Speaker 1: 22:45

Yes, it is. It's so fun to have babies around. It really is Tiring, but fun.

Speaker 2: 22:53

It is tiring, I understand, since I have a five-year-old grandbaby myself and she would not like me saying grandbaby, my daughter, right.

Speaker 1: 23:03

Is she?

Speaker 2: 23:04

already like that, so young. Oh my gosh. She is in Brazilian jujitsu classes now. She's four, but her father also started taking taekwondo not jujitsu, but he took taekwondo at four and she's just a little natural. So, yes, she's very grown up. She may only be four, but she acts more like she's 14.

Speaker 1: 23:27

Oh, my goodness, I'm a little concerned for you guys when she turns 13, and that's how our grandmothers Armani is. She is very independent, she wants to do everything on her own. And here she comes running with a knife, and it's how we don't do that Sometimes you're not going to do on your own. That's not your choice, right.

Speaker 2: 23:50

She's very independent. I think that's awesome and probably takes after her grandmother a little bit Our great-grandmother right.

Speaker 1: 24:00

Yeah, I told her I was her great-grandma. She goes no, you're just my real grandma. Oh, okay, I thought that was sweet too.

Speaker 2: 24:07

I'm sweet. Yeah, she sounds amazing. Jessica and Alexis didn't get their pacemakers until they were into their teens, but it sounds like the younger generation that they're starting to put the pacemaker defibrillators in earlier. Am I understanding that right?

Speaker 1: 24:25

Not really. No, unless, if he would have an event and that was the same with Jessica and Alexis if they would have had an event younger they would have to put the pacemaker in their stomach to protect it. Right, because they have so much growing to do, they just could put it in the chest plus, then you have the stomach to protect it. Right, so no, let's pray he never has an event and then he just does what we do. We go get it in at 13 years old.

Speaker 2: 24:58

Okay, so he was diagnosed at two, but they didn't jump to doing something about it. He was diagnosed at two days old. Two days.

Speaker 1: 25:06

Okay, yeah, they're two days old but they do blood. Then, when the EKG looked very similar to my granddaughters which hers looks just like mine then they went ahead and started a demo of the beta blockers when they were like 98%. Sure, it was long QT, with our family history being so scary. So he gets his medication twice a day. He takes it like a real champ.

Speaker 2: 25:30

Okay, so they are attending to this diagnosis via medication, and it's not the same medication you had for epilepsy. This is specifically for a long QT syndrome.

Speaker 1: 25:45

It is to keep their heart and rhythm so they do not experience an episode.

Speaker 2: 25:49

Okay, so that's good to know, though, that as infants they're not necessarily needing that face maker right away, but they are putting them on medication to keep their heart and normal rhythm.

Speaker 1: 26:00

Yes, when Alexis gives birth again, in the event that the EKG would look similar to our heart rhythm, then it'll probably be the same exact process. Now Armani does not have it. She is the first of my children not to have it, and unbelievable.

Speaker 2: 26:18

Why not? That is unbelievable.

Speaker 3: 26:21

Yeah, because I had.

Speaker 1: 26:22

Jimmy and Chrissy, alexis and Jessica. So I'm just thinking when she's born, that's it, she's going to have it. First off, they took her to NICU immediately after she was born. This is the process, and they monitor their heart rhythm for several hours. And then they have an electrophysiologist come in and look at their heart rhythm to see if it looks like ours the longer. Qt intervals and hers measured normal.

Speaker 2: 26:51

Wow, now is there a concern that, even though it's an infant, it looks normal that it could present itself later.

Speaker 1: 26:58

Well, they're taking blood, and if it's not the blood, then I do still have concerns about medication and things. For and this is just my own personal preference I really still want her to have an EKG, just to, but I'm pretty sure they probably won't because she doesn't have the gene.

Speaker 2: 27:17

Wow, that's just amazing. But that just shows how complicated pregnancy genetics all of that.

Speaker 1: 27:28

It's just so complicated and that medications actually play that big of a role in it. It's crazy.

Speaker 2: 27:35

Yeah, wow, you've experienced a lot, so many generations. You've seen your mother go through being diagnosed very late in life, compared to Alexis and to Jessica, and yet she lived in 94, which, wow. Well, aideen, you just amazed me.

Speaker 1: 27:57

She wasn't going to give up and I tell you I still can't believe she's gone some days, because she was a fighter.

Speaker 2: 28:04

She was a fighter. I think that's part of your genes too, Jackie.

Speaker 1: 28:09

Yeah, mom would always put herself down and I would say, my goodness, you've accomplished so much in your life, so much Can you imagine? Is that enough? You have the seizures. Then your kids grow up and they start having seizures and then your grandkids.

Speaker 2: 28:26

Yeah, and you have to witness that. Wow, Now did she see Armani? Oh?

Speaker 1: 28:35

yes, yeah.

Speaker 2: 28:36

So that was her great, great and rep.

Speaker 1: 28:39

That is, her great-grandkids. And then my niece has two sons, then my nephew has a daughter also, so she has several great grandkids.

Speaker 2: 28:49

What a legacy to leave behind that is a huge legacy, and then for her to be the one who solved the mystery it was because of what happened to her that you all discovered the Long QT syndrome diagnosis and a revision of the epilepsy diagnosis, which I think is amazing.

Speaker 1: 29:17

One day she called and she says she was feeling well and her heart was beat fast, which we thought she had bad boat problems, which I think she had a combination of both. But it was at that time I was like, are you okay, mom? Do you need to go to the doctor? Because I believe I was going to work that day. So I went on to work and then my son B stepped down. He went over there and told her come on, we're going to the hospital. They took her to the hospital and then that's where we started to receive them phone calls, which I think she was 72 or 73, saying your mom's in the intensive care in the cardiac unit, which, okay, you're 72. You're thinking, okay, that's not uncommon, but we get up there. I remember looking at mom's EKG and it was the most bizarre looking heart rhythm I'd ever seen in my life and I could come in and says I need to talk to all your family.

Speaker 1: 30:10

So they take us in this little room and he says your mom has something called Long QT syndrome. I remember writing it down they can. What in the world is this Can kill young people without warning? It was like all of a sudden the piece of that puzzle just went right into place.

Speaker 2: 30:31

Sure, I'm sure that's exactly what happened to you and your mom. How did mom react when she got the news? We just couldn't believe it.

Speaker 1: 30:40

We always knew we had something and we just went what? Because if you do your research on epilepsy, it's not hereditary. And I'm sitting there going whoa, why didn't?

Speaker 2: 30:51

we have it, I did know that epilepsy was not hereditary.

Speaker 1: 30:56

Yeah, and I just couldn't understand why we were all having these episodes. Because, I tell you, my sister kind of very close to losing her life too We've all had experience near death and my niece, she kind of very close to very sad story, but yet it's a story of hope and resilience. Yeah, you lose a child. You have to carry on through those kids. Look at what I am trying to do for my grandkids to carry on with my children. You have to be their eyes and ears and carry on their legacy.

Speaker 2: 31:28

I love how your family has all pulled together. You've supported one another. You've been brave to confront You've confronted a really serious diagnosis Head on. You and Melodyne, you have just taken the work by storm and are doing so much to inform other people so that they don't lose loved ones as well. I am just so impressed with you, jackie, and your family. Kudos to you. I love you all.

Speaker 1: 32:00

Thank you, anna, and thank you for having us on the show, and I just pray that people take the time to listen to the story. It will help save a life.

Speaker 2: 32:08

It's nice to know that, even when the worst thing happens and losing a child has to be one of the worst things a mother or a father can endure that you can still find happiness, you can still find joy and thank goodness, because Armani and Rhett and soon to be Casey they deserve families that are happy and that love them unconditionally and can show them the beauty of life, that you can live with this syndrome.

Speaker 1: 32:41

But you just have to be careful, just like with anything else. You can't be a diabetic and go out and need all the sugar you want. You have to follow a diet, thank you. Medication, it's no different.

Speaker 2: 32:53

Exactly. Thank you so much for coming on the program today, jackie. I'm so delighted that we could talk about this and talk about the blessing that comes with this diagnosis. Thanks for listening today. If you enjoyed listening to this episode, please consider becoming a patron. Just visit wwwpatreoncom. Slash heart to heart and pledge a monthly amount. It only takes a few minutes to make a big difference because of a pizza. You can help us continue to provide great programming for free to the congenital heart defect and bereaved communities. Have a great day, happy holidays and remember my friends. You are not alone.