A Mother’s Worst Nightmare | Mystery Diagnosis | Season 2 Episode 2

Added: 2026-06-03

[00:00:00]I immediately shut down cuz I didn't want her to see just how scared I was.

[00:00:05]>> Why did it take having to almost die for someone to be able to put this together?

[00:00:11]>> She almost seemed like she was possessed.

[00:00:13]>> You're dead, man. You're dead, miss.

[00:00:16]You're going to die.

[00:00:17]>> What is it that they're looking for? And how is this going to change my life?

[00:00:24]>> Next, three medical mysteries that defy the experts. Daphne Moyer is stricken with strange seizures 3 months after she's born. Doctors don't think she'll make it, and her parents are desperate.

[00:00:37]>> I just didn't understand what was going on and how could this be happening to my little girl.

[00:00:43]>> Larry Hatch can't imagine that his low blood sugar is anything to worry about until he begins to transform overnight.

[00:00:50]>> I just kept thinking in the back of my mind, I hope he's not dying. I wonder if he's dying. And Heather Anderson is a healthy 26-year-old until she suddenly finds herself on her deathbed.

[00:01:01]>> She managed to open her eyes long enough and say, "I wouldn't wish this on my worst enemy."

[00:01:07]>> When illness strikes, we look to doctors to give us answers. But what if they can't? For these unlucky patients, diagnosis is a mystery.

[00:01:31]Jenny and Ray Moyer were ecstatic when their daughter Daphne was born in October of 2003.

[00:01:37]>> It was a very emotional experience. I I remember crying which surprised me. Ray had a baby about 15 years before Daphne was born who was born premature and she passed away from complications from the prematurity.

[00:01:54]>> Having Daphne was absolutely another shot at fatherhood. She certainly felt special.

[00:02:01]>> Everything seems perfect when they leave the hospital, but once Ry and Jenny bring Daphne home, she's inconsolable.

[00:02:09]carrying her and patting her wouldn't help. She might settle down for a little while, but just go into her screaming again. One day, Daphne cried for about 12 hours.

[00:02:23]>> I wasn't overly concerned compared to the history I had with my previous daughter. This seemed like a small bump in the road.

[00:02:31]>> But I did always know that there was something more than just what other babies go through.

[00:02:38]Then when Daphne is 3 months old, Jenny and her mother look on in shock as the infant goes through a fleeting but bizarre episode.

[00:02:46]>> We were both in the kitchen and I had Daphne on my lap and was feeding her.

[00:02:51]All of a sudden, her eyes started going back and forth and it was just a couple of seconds and it was, "Wo, what's what was that?" Jenny got the video camera and videotaped it. I wanted to make sure that the doctors could see this happening. She would have like a spurt where her eyes would go back and forth for a couple of seconds and maybe fraction of a second later they would start again. We were totally freaked out. We took her to the emergency room right away.

[00:03:24]Nobody at the ER wanted to watch the video because whenever they would check in on Daphne, she was just laying there and was perfectly normal. If she did have one of the eye movements, by the time we would call somebody to look, it would be over with.

[00:03:40]>> When a neurologist finally examines Daphne, he doesn't think there's anything to be concerned about.

[00:03:45]>> We had to really persuade him to look at that video. And when he did, he still was not moved by it. His explanation was that it was some pre- migraine activity.

[00:03:58]He told us we could go home. I was a little disgusted and said, "So, what are we supposed to do? Just ignore, you know, the baby's eyes rolling out of her head?" But we were just given a pat and sent home.

[00:04:13]>> But over the next few days, these strange episodes happen more frequently and begin to affect Daphne's entire body.

[00:04:20]>> Her eyes would go back and forth and at the same time, she would stiffen out >> and then she'd scream and cry and the next one would come. She almost seemed like she was possessed.

[00:04:32]>> It was frightening. And it was at that time that I knew that something was seriously wrong with Daphne.

[00:04:39]>> Jenny and Ray start to question the pre- migraine activity diagnosis.

[00:04:44]Determined to find out what's happening to her daughter, Jenny begins researching Daphne's symptoms on her own. I just would get on my computer and spend hours and hours typing in eye movement back and forth and arm extensions, seeing what I could come up with.

[00:05:02]>> What Jenny discovers is frightening.

[00:05:05]>> The answer came in a film clip that another parent sent of their child. In the clip, the young boy was doing exactly what Daphne was doing. I mean, exactly.

[00:05:19]Jenny and Ry are convinced that Daphne has been suffering from infantile spasms, a form of epilepsy often associated with mental retardation and developmental delay.

[00:05:30]>> At first, the two words together sound pretty innocent, but then I read that it was considered a cataclysmic seizure disorder that didn't respond well to medicines.

[00:05:43]>> Terrified, Jenny and Ray rushed Daphne to the ER. This neurologist came in and saw Daphne having an episode and he was as convinced as we were that it was infantile spasms.

[00:05:57]Rey just broke down and started crying.

[00:06:01]He told the neurologist that he had a daughter from a previous marriage who passed away.

[00:06:08]>> Seemed like a continuation of a nightmare.

[00:06:14]Over the next few weeks, the neurologist prescribes a series of anti-seizure medications. Some have devastating side effects. Others simply don't work. And Daphne's seizures are getting worse.

[00:06:26]>> The episodes were occurring 20 to as many as 30 times a day, up to 10 minutes at a time.

[00:06:34]>> With each new episode, Jenny and Ray feel like they're slowly losing their daughter. She seemed to be going away.

[00:06:43]She seemed to almost be moving towards a catatonic state.

[00:06:46]>> When she was 8 months old, while other babies are starting to learn to crawl and eating pureed foods in a high chair, Daphne was still like a two-month-old.

[00:07:00]She just kind of looked to the left and gazed off into nowhere. She stopped being able to uh drink a bottle. She had to be given a feeding tube.

[00:07:12]>> I just didn't understand what was going on and how could this be happening to my little girl.

[00:07:21]>> Finally, after agonizing months of trying different medications and watching their little baby succumb to seizure after seizure, Jenny and Ray find a drug that works.

[00:07:31]Daphne was seizure-free after her first dose of the new medication. It was a miracle.

[00:07:37]>> She went from sleeping all day to never wanting to take a nap. She would take her rattle and look at the little beads inside as she twisted it around. She really started connecting again.

[00:07:51]>> Can you say hi?

[00:07:53]>> Hi, Dad.

[00:07:54]>> Is she the cutest thing?

[00:07:58]>> But the relief doesn't last.

[00:08:01]Deafany had five months of great development and seemed to be making progress. And then when she was 15 months old, she had her first stroke.

[00:08:17]15-month-old Daphne Moyer has been suffering from terrible seizures and severe developmental delays. Five months earlier, her parents finally found a drug that seemed to work. But just when they think their little girl is getting better, the unimaginable happens.

[00:08:32]>> She had been very irritable all day. And later in the afternoon, my mom noticed that she was holding her arm funny. I said, "Jenny, come look at her arm. She doesn't seem like she's moving it." She puts her down on a blanket on the floor and starts checking her.

[00:08:49]>> I tried to get her to move her arm and notice she was only using her right arm instead of her left. Then she feels her leg and feels the tremors in her leg and rushes to the phone and calls the hospital right away.

[00:09:03]>> Jenny and her mother rushed Daphne to the ER. We were terrified and were trying not to think the unthinkable. She was taken to CAT scan and an hour later the neurologist came in and explained to us that Daphne had a stroke and added that it was a significant stroke. When the doctor explained to us what happened, life just stopped.

[00:09:31]>> The neurologist drew a picture of what they saw in Daphne's MRI. He showed the arteries running up to Daphne's brain.

[00:09:43]He colored out a little portion to show that it was blocked off. He began to explain to us that Daphne had an unusual finding under her MRI that was called Moyaoya disease.

[00:09:58]>> In Moyaoya disease, the main vessels that supply the brain with blood become blocked off. Daphne's brain had been starving for blood, which was causing her seizures and stroke. The word moyaoya is Japanese for puff of smoke, which refers to the appearance of tiny abnormal blood vessels that can be seen on the patients brain scans. Doctors don't know what causes this extremely rare disease. But left untreated, it leads to neurological damage and can be fatal.

[00:10:25]>> It was just devastating. Just absolutely devastating.

[00:10:31]>> The only treatment for Moaoya is surgery. But doctors tell Jenny and Ray that Daphne is most likely too weak to survive the risky procedure.

[00:10:40]She would continue to have strokes like the one we saw and it would eventually die.

[00:10:47]>> He gave her uh gave her a couple weeks at most.

[00:10:55]>> 2 days later, Daphne suffers yet another stroke in the hospital. The night after Daphne had the second stroke, she was just basically paralyzed and could barely even open her eyes to look at us.

[00:11:10]We were just, you know, just hugging each other and holding each other's hand.

[00:11:16]>> We requested that the chaplain of the hospital bath pie staff me. They made a plaster cast of her hands and her feet, cut some hair for us so that we could remember Daphne later.

[00:11:32]We just talked about the things that we were going to miss.

[00:11:36]>> Daphne loved to dance in the kitchen and loved to look at trees and it was just hard to think about not doing those things with her. We took her home and we had everything set up for the final event. We had all the medicines lined up. We had all the machines brought to the house to make life as comfortable as possible until until it was time for Daphne to go.

[00:12:03]I don't I just don't think that there could be anything more devastating than losing a child.

[00:12:11]But she didn't die. She did not die.

[00:12:21]She began this miraculous fight back as she always has. The first thing she did was wiggle her toes and moved her feet and just continued to regain more and more of her functions.

[00:12:36]>> As Daphne shows signs of recovery, Jenny begins to wonder whether her little girl might be a candidate for surgery after all. She contacts a neurosurgeon at Stanford University who specializes in Moyaoya disease.

[00:12:48]>> I get several emails from Moyaoya patients or their families a week asking if I might be able to help.

[00:12:54]>> At that point, I thought I had nothing to lose by asking them. And even if they said, "No, I don't want to touch this patient." I would feel like I had done everything that I could.

[00:13:05]>> Jenny sent Daphne's MR scan and records and we reviewed them. Although Daphne had already sustained significant strokes, we felt that she had the potential to make a very good recovery.

[00:13:18]The brain of a one or twoyear-old has an incredible ability to repair itself and restore function.

[00:13:25]>> Within a week, Dr. Steinberg's office calls. Jenny and Ray are overjoyed to hear that Daphne has been accepted as a surgery candidate.

[00:13:33]Even if it was a risk, my goodness, what's what's a risk of surgery when you've just been told that your daughter's probably going to pass away within a couple of weeks?

[00:13:44]>> In late February of 2005, the family flies to California with 16-month-old Daphne.

[00:13:50]>> We had our eyes open from the beginning about the surgery. We knew that it wasn't a miracle that it wasn't going to fix the areas in Daffy's brain that had been damaged.

[00:14:04]Jenny and Ray are hanging on by a thread as Daphne is prepped for a risky brain surgery that could save her life.

[00:14:12]There are always risks involved in brain surgery. If you lost a cup of blood during surgery, that's no big deal to you. But if Daphne, who was this big, loses a cup of blood, she could die.

[00:14:34]At 16 months old, Daphne Moyer has been diagnosed with a rare brain disorder called Moaoya disease. The blood vessels leading to her brain are blocked off, and surgery is Daphne's only hope for survival.

[00:14:49]Since there's no way of opening up the blocked blood vessels, we provide a new source of blood flow around the blocked blood vessels. It's like what's done for the heart sometimes. We're doing the same thing with the brain. Bypass surgery doesn't undo the damage that's already been done. Our job is to prevent future worsening from new strokes.

[00:15:19]I knew the minute I saw Dr. Steinberg walking down the hallway that things had gone well. He walked with his head up and a smile on his face. His exact words were, "Dafany behaved herself."

[00:15:30]>> I just let the air out of my out of my lungs. I just took a big deep breath and said, "Ha, we've overcome the last hurdle."

[00:15:40]>> 6 months after Ray and Jenny were told that Daphne would die, they're celebrating her second birthday.

[00:15:46]>> Daphne has made a great recovery. She is able to do almost everything she could do before her stroke. She moves both arms. She moves both legs. She smiles at us. She interacts with us. So, she's just a blessing.

[00:16:06]>> It remains to be seen how much damage Daph's brain has suffered, but Dr. Steinberg is optimistic.

[00:16:12]>> We've seen quite remarkable improvement in the last 6 months. The bypass arteries have now grown in a very luxurious blood supply to both sides of her brain. the young brain uh can recover in ways that uh an adult brain cannot recover. It won't matter if she doesn't develop to the full potential of an normal person. As long as she's happy, that's all we ever care about.

[00:16:39]>> Moyaoya occurs in only one in a million people. Ray and Jenny feel lucky that Daphne was diagnosed at all.

[00:16:46]>> Most pediatricians are not used to recognizing the Moyaoya disease in a 16-month-old. It is rare. It's not seen even by a lot of neurologists or neurosurgeons.

[00:16:58]>> Daphne has taught me not to take what doctors say at face value. They don't know your child as well as you do. So, you just have to go with what you feel and do your own research and try to keep finding the right person to help your child. That's why we have Daphne today.

[00:17:23]Daphne Moyer was much too young to understand what was happening to her.

[00:17:28]But when Larry Hatch's body started to go through strange changes, he was terrified.

[00:17:35]>> I was a carpenter. I carpented for about about 11 years altogether, mostly remodeling some new house building.

[00:17:41]>> He was just full of energy. He was able to get outside and mow. He did all kinds of house chores.

[00:17:48]>> Larry never smoked. He never drank. He was just a strong man in his convictions and in his work.

[00:17:55]>> Life was good. Life was great.

[00:17:58]>> But in the early part of 2004, life begins to get very strange.

[00:18:03]>> One morning about 2:00, I woke up completely soaked. I had sweated enough to wet the entire bed, head to toe. I didn't think anything about having a wet bed. I just scooted over about a foot and went back to sleep. Thought no more about it.

[00:18:16]>> But a few days later, it happens again.

[00:18:19]It was a little bit different this time.

[00:18:20]The first time, uh, I knew where I was at. The second time, I didn't recognize anything about the bedroom. And what was worse, I looked over at my wife laying right beside me, and I didn't know who she was.

[00:18:33]>> Larry's strange episodes continue over the next couple of weeks.

[00:18:36]>> It was my habit to get up before Larry in the mornings, and to reach out to Patty, good morning. Well, this morning that I reached over and touched him, Larry's entire body was soaking wet. His pajamas were wet and I started feeling around him in the bed was wet. So I woke him up and told him that he was going to the doctor.

[00:18:57]>> Cheryl makes Larry an appointment for that afternoon. But before he heads to the doctor, Larry visits his friend Jack.

[00:19:05]I said, "Larry, uh, what are you up to today?" And he said, "Oh, uh," he said, "I'm going to the doctor today." And I said, 'Well, what are you going to the doctor for? He goes, "Well, I don't know." I said, 'Well, who's the doctor?'

[00:19:17]"Well, I don't know." And then just out of the blue, he said, "Uh, I'm going to the doctor today."

[00:19:25]He probably told me that he was going to the doctor 15 or 20 times.

[00:19:31]Then he stood up. He takes his he takes his hands and he locks his fingers together like this. He puts them on top of his head and he's looking around like this and he's going, "I must be going crazy. I must be going crazy." I'm thinking he's fixing to have a heart attack.

[00:19:49]>> Jack calls 911 and then calls Cheryl who rushes over to the shop.

[00:19:54]>> Soon as the medics got there and they got his vital signs and then they checked his blood sugar and it was 35.

[00:20:01]Most people's fasting blood sugars are going to be 70 to 80.

[00:20:08]The paramedics administer a glucose shot and Larry slowly begins to regain consciousness.

[00:20:14]I remember nothing until they had given me a shot.

[00:20:19]>> That afternoon, Cheryl drives Larry to his doctor for testing. He's diagnosed with hypoglycemia or low blood sugar.

[00:20:26]They tell him that it should be manageable, provided he eats regularly and often.

[00:20:30]>> I started eating more frequently and of course I love eating so it was not a big problem at all to eat a snack in the morning and then to eat a snack in the afternoon and eat a snack just before I went to bed.

[00:20:41]But it soon becomes clear that even eating six or eight times a day isn't going to be enough.

[00:20:46]>> I was still having these episodes. In fact, I started to have them more frequently and stronger, worse episodes than I'd been having.

[00:20:54]>> Then something even stranger begins to happen. Cheryl realizes that her husband is disappearing in the middle of the night.

[00:21:01]>> I would wake up and reach across to feel of him and see if he was there. He wouldn't be in the bed. Each time Cheryl finds Larry somewhere in the house in a state of complete disorientation.

[00:21:13]>> I might be in the the living room standing up or maybe in the kitchen standing in front of the cabinets. I might be in the study, but I would be just standing there totally out of it.

[00:21:22]>> When I went to sleep, I never knew if he was going to be just sleeping normally or if he was going to be past the point of being able to revive.

[00:21:32]>> I just kept thinking in the back of my mind, I I hope he's not dying. I wonder if he's dying.

[00:21:40]But the most bizarre symptom is yet to come. Soon, Larry's friends and family begin to notice an eerie metamorphosis.

[00:21:47]Larry's face is changing literally right before their eyes.

[00:21:51]>> The change was phenomenal. It was unreal.

[00:21:54]>> Instead of being 50 years old, he started to look like he was closer to 70 years old.

[00:21:59]>> The wrinkles on his forehead were probably as big around as your finger.

[00:22:03]They were just wrinkles up on top of wrinkles. He could barely see out of his eyes because his face was so swollen.

[00:22:12]>> I kind of looked like a werewolf.

[00:22:14]>> I look bad. I look weird. I looked old.

[00:22:17]>> Alarmed, Larry's doctor sends him to an endocrinologist for blood work.

[00:22:21]>> The initial diagnosis of all this the swelling and the the facial features was that I had a growth hormone problem.

[00:22:30]Growth hormone is produced at high levels in children and at lower levels in adults. It stimulates cell growth.

[00:22:37]Larry's blood work shows that his growth hormone level is unusually low, but the swelling in his face and body and his abnormal hair growth are signs of growth hormone excess. His doctor is confused.

[00:22:49]>> He said, Larry said, I've never treated an adult with a growth hormone problem.

[00:22:54]I've never even heard of an adult with a growth hormone problem. It was totally out of their league.

[00:23:00]>> The whole situation just became more than blood sugar. There was something really definitely wrong with Larry and we needed to find out what it was.

[00:23:15]>> 57year-old Larry Hatch has developed an unmanageable case of hypoglycemia and has experienced a mysterious physical transformation. And his doctors can't explain why.

[00:23:27]The doctor finally said, "That's it. I have the slightest idea what your problem is." Said, "I'm going to call the University of Texas Medical Branch there in Galveston and see if we can get you in."

[00:23:40]>> 7 months after Larry's symptoms first began, he sent to the University of Texas Medical Branch for a full medical workup.

[00:23:47]>> I remember just like it was today, this little old doctor walked in. I knew just from shaking his hand and looking at him that this was something unusual. The first thing I noticed was his face and the very deep wrinkles and it was kind of striking to look at.

[00:24:02]>> After reviewing Larry's medical records, Dr. Bage begins to examine Larry.

[00:24:07]>> He started over on this side, the right hand side, and he went down like he normally do. He got to my left side, and about this fast, he said, "I hear kind of a muff sound." Normally, you just hear someone taking a deep breath, but it was completely silent in there.

[00:24:29]>> Dr. Bage knows this can't be good. He orders a series of X-rays. The results are astonishing.

[00:24:37]>> We found this very large tumor and it looked like it was taking up pretty much the whole side of his lung.

[00:24:46]So, I cried. Cheryl cried. If God was going to take me home, that's fine. but don't let me die of lung cancer. Let me die in my sleep.

[00:24:54]>> I cried and I prayed to God. You know, I don't want him to be gone. I don't want him to be out of our lives.

[00:25:04]>> The tumor is so huge, Dr. Bage isn't even sure if it can be safely removed.

[00:25:09]He consults with Dr. Jay Zwishenberger, the head thoracic surgeon. In the 20 years I've been doing chest surgery, I've never seen a tumor this big. And my first impression was, "Oh, I can't think of any way I could possibly be able to cut this out." We're used to cutting out tumors that are the size of a walnut or a baseball. This tumor was the size of a basketball.

[00:25:32]A tumor this large can be deadly on its own. But Dr. Bage thinks the tumor may be the source of Larry's other symptoms as well. When people have these large tumors and they're having low blood sugars, a lot of times you think that maybe the tumor itself is just sucking up all the glucose. But in this case, we thought that he had this syndrome called nonlet cell tumor hypoglycemia.

[00:25:53]Nonlet cell tumor hypoglycemia is a rare condition in which a tumor secretes a protein called proig 2 into the bloodstream. ProIigf2 causes cells to consume an excessive amount of sugar resulting in hypoglycemia.

[00:26:08]In rare cases, the protein can also act like growth hormone, causing strange facial swelling and hair growth.

[00:26:15]>> This is a once in a-lifetime case. I looked up all the prog tumors, and it looked like there was less than 200 cases in the world, and there was only two cases previously that showed that it could also produce these features where you had the swelling.

[00:26:28]>> Larry's blood tests confirmed that his proig levels are five times what they should be. He's been carrying a lethal tumor in his lung for years. I'm also facing hypoglycemia that's fixing to kill me faster than the cancers does if they can't stabilize it. And I said, you know, it does it doesn't look good, Larry. You're you're dead, man. No, you're dead, man. You're going to die.

[00:26:50]>> Larry's doctors present him with the best option. Try to remove the lung tumor and see what happens. They didn't know for sure that removing the tumor would help the hypoglycemia, but if we didn't do surgery, then he was going to die.

[00:27:09]>> Larry agrees to go through with the surgery to remove the lung tumor. He's given a 50% chance of dying on the operating table.

[00:27:17]>> As they were going to take Larry away from me, I kissed him and told him I loved him and that I was going to be praying angels around him. And then they roll Larry through a door and I had to go back upstairs.

[00:27:29]>> I knew that there's a good chance I was going to die and die pretty quickly. So I said, "Boy, I'm going to think about something else. I'm going to tell my family goodbye and then see if I can count backwards to 90 before I pass out."

[00:27:42]100 997 96 and then uh we went and started. I made a small incision and the first thing I saw was nothing but tumor. Everybody in the room just went, "Oh, wow. This thing's huge." The way to think of it is to take a basketball and deflate it and put it inside somebody's chest and just squash anything that gets in the way.

[00:28:06]And that's what I saw. There was so many blood vessels going this tumor that if I cut in those blood vessels or tore them, he would bleed to death.

[00:28:18]Doctors have discovered an enormous tumor in Larry Hatch's lung that's been causing his bizarre physical transformation and extreme hypoglycemia.

[00:28:26]They think they can save Larry if they can get the tumor out. Doctors have been working on Larry for 8 hours and then the tumor just lifted out just like a basketball. I mean, we just lifted it out through the incision and delivered it like a baby to the back of the table. Probably weighed 10, 15 lbs.

[00:28:52]>> The results are almost instantaneous. As soon as the vessels leading to the tumor are cut, Larry's blood sugar levels begin to stabilize.

[00:29:01]>> It seemed almost immediate that we started seeing his blood sugars get back into the normal range. That was when we had a big sigh of relief.

[00:29:08]>> When they finally allowed us to go see Larry, he was in ICU. I looked straight at Larry and Larry looked so good. Part of the wrinkles on his forehead had begun to relax.

[00:29:19]>> It was dramatic. I mean, he changed appearance almost like on the movies.

[00:29:24]>> Within weeks, Larry's hypoglycemia is gone and the swelling in his face and excess hair disappear completely.

[00:29:32]>> It is an answered prayer to see him walk and talk and to see him totally changed.

[00:29:40]I know inside and out is a true miracle to me.

[00:29:45]>> But Larry and his family still wonder why it took so long for his tumor to be diagnosed.

[00:29:50]>> All the primary physicians were focusing on a difficult to control glucose problem and a hormone problem and there was an initial focus on the fact that it might be driven by a tumor.

[00:30:02]>> The doctors have said it's a miracle. We know it's a miracle. They had given me 6 months and then they had given me two to three years and now they're saying it may be 30 years. Cancer is not a death sentence anymore. You can beat it. You can beat it. Everyone could tell there was something wrong with Larry just by looking at him.

[00:30:21]But for 26-year-old Heather Anderson, the signs of a mysterious illness were subtle.

[00:30:27]>> My life at age 26 was easy. It was fun.

[00:30:31]I met the man of my dreams. I was just living life to the fullest. Everything was going exactly how she wanted it to go. She was just happy, on top of the world.

[00:30:40]>> And then suddenly it blew up. I mean, her whole life changed.

[00:30:46]It all started with a simple call.

[00:30:49]>> It felt more like a tickle in the back of your throat that you had something there and you were just trying to get it out and you're constantly I'd be talking with her and all of a sudden it'd almost be like a cough spasm. I'd say, "Sissy, are you okay?

[00:31:02]what's going on? And she'd say, "Oh, I just had that that cough."

[00:31:05]>> We thought maybe it could be allergies.

[00:31:07]We lived at these apartment complexes and we were on the third floor and I remember you could look out our balcony and you could just see the pollen covering all the cars >> and so we chopped it up to that.

[00:31:19]>> But it soon becomes clear that something more than allergies is afflicting Heather. Her cough gets worse and now is accompanied by fever.

[00:31:27]>> All of a sudden, it wasn't this soft little cough anymore. Now you can hear the infection in her lungs and >> I'd end up gagging and then I'd have tears running down my cheeks cuz I was coughing so hard. I did go to the doctor when I started having the coughs and it would be categorized as either cold or I have bronchitis and they would tell me to take some cold medicine and get some rest. Inevitably, you know, 6 7 8 days later, the cold or bronchitis was getting worse. She just suddenly was not a healthy person anymore. We all began to say, "Something's not right."

[00:32:04]>> Heather sees various doctors without a lasting solution. Finally, in December of 2000, a year after Heather's first bout with bronchitis, she's referred to pulmonologist Dr. Rob Shriner. I walked into the room and saw a young, relatively healthy appearing woman who was smiling, but coughing incessantly.

[00:32:26]>> Dr. Shriner performs a sporometry test which measures the size and force of Heather's breath. Her airflow is 70% of normal, an indicator of asthma.

[00:32:37]>> He told me I had adult onset asthma and that it was very treatable and it was easy to live with. I did feel relief that there was a name to all these illnesses that I've been having and it wasn't just me being crazy.

[00:32:53]>> Dr. Shriner sends Heather home with a prescription for inhalers.

[00:32:57]>> They did seem to help because I was feeling better and I wasn't getting sick as much.

[00:33:03]>> Heather sticks with the inhalers for a few months and feels good. That winter, she and Trigva get engaged and buy their first home together. She finally feels like she has everything under control.

[00:33:13]But that feeling doesn't last.

[00:33:16]We had sort of finished moving in enough to have our sofa and our coffee table there. and she propped her leg up on the coffee table and she had a swollen ankle and I said, "Sissy, what what in the world is that?" It was this awful purple rash, sort of a raised, knobbyby, irregular dark red rash.

[00:33:36]>> My ankle was starting to throb and feel kind of hot. My husband said, "You're going to go to the doctor and see what what's wrong. What is this rash?"

[00:33:47]Heather's primary care physician tells her she has poison ivy. Trig doesn't buy the diagnosis.

[00:33:53]>> I had poison ivy as a kid repeatedly and that there was no way that this was poison ivy. I was kind of embarrassed for them to have suggested that that's what it was.

[00:34:02]>> I was a little bit confused as to what was going on, but it cleared up really quickly. So, I felt okay about it at that time.

[00:34:11]>> But a month later, the mysterious rash returns. The rash came back and started creeping up my leg slowly but surely.

[00:34:20]And it would be kind of like white in the middle and all around the edges of it were red, bright red and bright purple. It was hot and burning and throbbing and it was just very uncomfortable.

[00:34:33]>> Heather sees her dermatologist repeatedly. Each time he prescribes a steroid cream and then steroid pills to get rid of the rash, but it keeps coming back.

[00:34:43]Desperate for an answer, Heather agrees to a skin biopsy.

[00:34:46]>> They took about a that big of a chunk off the back of my leg and sent it off to the lab.

[00:34:53]>> And it came back with some results that said it had high eosinaphil.

[00:34:58]>> Eocinophils are a type of white blood cell. The lab reports show that Heather's eosinaphil count is elevated, but her doctor isn't concerned. An elevated eocinaphil count is often found in patients with allergies or asthma.

[00:35:12]The doctors diagnosed Heather with a condition called urtdicaria.

[00:35:16]>> So I remember I got online and we looked up urtdicaria.

[00:35:21]>> Eradicaria is a fancy name for hives raised rash.

[00:35:25]>> With no answer except for a diagnosis of hives, Heather is perplexed. For the next 6 months, her rashes appear intermittently.

[00:35:34]What's worse, Heather begins to feel a bizarre sensation in her hands. I started noticing that I had a tingling just in my left hand. It came and went and it just felt like my fingers were kind of numb a little bit. I can remember looking at my hand and and making a fist like this several times going, "That's really weird. Why is it doing that?" I didn't tell anybody about the tingling until later because I was so focused on the other things that were going on like my rashes that it just didn't really seem that important to me at the time. It never occurred to me that her cough, which was diagnosed as asthma and this rash and now a tingling hand had anything to do with one another.

[00:36:20]By fall of 2002, Heather has endured almost 3 years of these strange chronic symptoms. Then suddenly she goes from bad to worse.

[00:36:30]>> We went to our nephew's baptism and I remember her saying that she really wasn't feeling well.

[00:36:36]>> Yeah. And I said, "Well, I'm just going to lay down and rest." And just woke up drenched in sweat. I took my temperature and I had a 103.7 temperature.

[00:36:45]>> I've never seen her as sick as she was then. We go to the doctor and the doctor um listens to her breathe and describes it as it sounds really crunchy. As soon as they took her vital signs, they called an ambulance to come and pick her up, take her to the emergency room.

[00:37:03]>> Heather is taken to North Side Hospital in Atlanta. Her family rushes to meet her.

[00:37:08]>> She was in the triage unit and she had a curtain around her and I pulled the curtain back and she was just lying on the bed, her face just as white as a sheet. She had tubes coming out of her nose.

[00:37:20]>> Her eyes were very sunken in and very dark and she was just sort of limp and struggling to breathe. It would be like and it sounded like she really couldn't breathe. I immediately shut down cuz I didn't want her to see just how scared I was. It's horrible. It It's the worst thing you can imagine to see your child lying there and not being able to help.

[00:38:00]A cough, a cold, a rash, a tingling hand. Heather Anderson's symptoms seemed minor, but 3 years after they first appeared, she finds herself in a hospital bed struggling to breathe.

[00:38:14]She managed to open her eyes long enough and say, "I wouldn't wish this on my worst enemy."

[00:38:19]>> I had heard from one of my colleagues in the hospital that a patient had been admitted the night before with an unusual set of symptoms and signs.

[00:38:31]>> 2 years after Heather saw Dr. Rob Shriner for a cough, he finds her in a completely different state.

[00:38:38]>> She was very breathless, anxious, swollen. Um, she was in trouble.

[00:38:44]>> Determined to find an answer for Heather's mysterious illness, Dr. Shriner recommends a risky lung biopsy called broncoscopy. You can do that test perfectly well and the lung will collapse or there'll be unusual bleeding or the patient could have a reaction to the anesthesia.

[00:39:03]>> What I was mostly scared of was what are they going to find when they go in there? you know, what is it that they're looking for and how is this going to change my life?

[00:39:13]>> Broncoscopy is a test where a flexible lighted tube is passed through the nose, back of the throat down into the lung to have a look around, but more importantly to take samples of the lung tissue.

[00:39:27]>> After a tense 40 minutes, Heather's broncoscopy is over and the lung tissue is sent to the lab. When the results come in, she and Triba recognize a familiar finding. an extreme elevation of the white blood cells called eocinaphils.

[00:39:42]Whereas it would be normal to have zero or one or two eosinaphils in the lung tissue, Heather had 85%.

[00:39:51]Coupled with the lesions on her legs and the pre-existent history of asthma and sinus trouble, we knew then that we were dealing with Shurg Strauss syndrome.

[00:40:03]Shurg Strauss syndrome is a rare autoimmune disorder in which the body overproduces eocinophils, a kind of white blood cell. These extra eocinophils form clusters that attack healthy tissue. The body in essence turns on itself. Its causes are unknown, but the damage set off by this short circuit in the immune system can be devastating. There were defining characteristics, asthma being one of them, skin disorders being another, nerve disorders being another, and all these things were everything that I had.

[00:40:37]>> Heather's eosinaphils were invading the lungs and her skin. And I suspect if her disease had gone on untreated, the eosinaphils would have begun attacking her heart and nerves and kidneys and maybe even her brain. We started to look back at the history of everything that had happened in eosinaphils. It triggered the leg biopsy and how the eosinaphils were really high. And I remember being very frustrated saying this could have been caught. Why did it take her having to almost die for someone to be able to put this together?

[00:41:18]The doctors taking care of her at the time thought that that mild elevation in eosinaphils was related to the overall allergy condition but not the cause of the problem itself.

[00:41:29]>> I definitely felt all of it makes sense now. Now let's figure out how to handle it. Let's figure out how to treat it.

[00:41:36]>> Steroid medicine by mouth so-called predinazone is the timehonored treatment of sher strauss. Predinazone will restore the eosinaphil counts to normal levels in the blood.

[00:41:50]>> Heather is put on high doses of predinazone and released from the hospital. The road to recovery is slow.

[00:41:57]>> Everyone who takes prennazone has mood disturbances, increased appetite, weight gain, thinning of the skin, acne, changes of the face and body. There was that tension of thank God there's prednazone to save your life and but I look in the mirror and I don't know who I am. I remember my mom asked me you know you have to figure out if you're a person that's living with a disease or if you're a diseased person and you have to figure out which way you're going to live your life.

[00:42:33]But I decided I will not allow it to control me. this is not going to define who I am and I'm going to beat it.

[00:42:40]I would say that I wasn't truly back to normal until about a year and a half.

[00:42:47]Slowly I was weaned down on the predinazone.

[00:42:50]>> Predinazone took away all of the chest symptoms and the skin lesions and made the eosinaphil count normal.

[00:43:00]>> Life today is beautiful. I'm pregnant.

[00:43:03]I'm 6 months pregnant and I actually feel better than I have in three years.

[00:43:09]>> Heather knew all along that something wasn't right and that there was an underlying explanation for all of her troubles.

[00:43:15]>> When your body is telling you that things are not right, you have to listen to it and you've just got to keep pushing and keep pushing until somebody says, "I care. I want to find out about what's causing this in you.