Trey%2C+as+pictured+in+his+senior+photo.

Photo courtesy of Marcus Robertson

Trey, as pictured in his senior photo.

Marfan syndrome made my brother beautiful. Then it killed him.

March 14, 2021

I was ten years and a week old when my brother Trey was born. We were poor, living in a single-wide trailer in rural Alabama coal country. He was a joyful baby, quick to smile and laugh. He and I bonded immediately — which was lucky, because we shared a bedroom (and bed) until I moved out for college at 18.
As he grew up, it didn’t take long to realize what an entertainer he was — wickedly funny, and with seemingly endless social energy.  If he couldn’t make you laugh, he’d make sure to get a reaction out of you one way or another — even if it meant showing you how he could twist his arm 360 degrees or bend his fingers back to his wrist.

He seemed to mature fast. He was smart as hell, and he developed his own taste in music far quicker than I did — with equal parts Post Malone, musical theater, and The Beatles. He’d imitate my tongue-in-cheek sense of humor and end up doing it better than me. He outpaced me in height, too. By the time he was 16 and I was 26, he broke six feet (an inch taller than I’ll ever be) with long legs, long arms and a long, chiseled face.

Little did I know, but his body was trying to tell us all along. He had all the signs. But by Sept. 28, 2020, it was too late. The looming danger foretold by his features claimed his life that afternoon.

Trey as a child. (Photo courtesy of Marcus Robertson)

One in every 5,000 to 10,000 people lives with a condition called Marfan syndrome, a genetic disorder that affects the body’s connecting tissues. Many don’t know they live with the condition, which can kill if left untreated. 

My brother was likely one of them. If I had it my way, he’d be the last sudden death from undiagnosed Marfan.

Marfan is a rare condition, but if detected early, it can be treated. In the last few decades, the life expectancy of Marfan patients has skyrocketed. Today, with the proper treatment, a person diagnosed with Marfan syndrome can live just as long as anyone else.

“There was a time when Marfan was a death sentence,” said Dr. Abe DeAnda, chief of cardiovascular and thoracic surgery with the University of Texas Medical Branch. “You weren’t going to live through adulthood, probably weren’t going to have kids.”

DeAnda specializes in surgery of the aorta, the largest artery in the human body and one of the main areas of concern for people with Marfan syndrome and related conditions. 

Marfan syndrome is caused by a mutation in a gene called FBN1 and it is what’s called an autosomal dominant condition. That means if one parent has the mutation, their child has at least a 50 percent chance of inheriting it. If both parents have it, their child is guaranteed to have it as well. And since it’s caused by a gene mutation, a child can be born with Marfan despite neither parent having the condition. About 25 percent of cases are caused by those new mutations.

Trey, far right, pictured with childhood friends. (Photo courtesy of Marcus Robertson)

That gene, FBN1, controls the body’s production of a protein called fibrillin-1, which provides structural support and elasticity to the body’s various tissues. But since Marfan syndrome patients have mutated versions of FBN1, their fibrillin can end up forming differently than most people’s. That’s what can cause outward signs to manifest — like unusual height, length of limbs and digits, and spontaneous stretch marks.

It also causes thinning in the walls of the aorta, which can lead to a dangerous condition called aortic dissection — a tear in the artery, usually near where it connects to the heart. Aortic dissection can lead to death, and is the number one killer of those with Marfan syndrome.

“The main symptom is severe pain, and it can be kind of anywhere in that area,” said Dr. Gregory Perens, pediatric cardiologist and Marfan specialist at the University of California, Los Angeles Children’s Heart Center. “The chest, the back and it can extend to the neck or stomach. The pain is described as sharp, tearing, ripping or moving. It’s urgent, very urgent that they get to the E.R.”

Thanks to advancements in surgery, those who make it to the operating table often survive. Some doctors, like DeAnda, can perform this surgery so well that patients don’t even need a blood transfusion. Still, proper treatment means never getting to that point in the first place.

“The reality is, about 40 percent of [aortic dissection] patients are going to die, if they make it to a hospital,” DeAnda said. “The other cold reality is, most people never make it to the hospital.”

Today, we have medicines that can keep the aorta from growing too quickly and tearing, or at least prolong the process so that surgery can be planned ahead of time, before things get dire.

“Once someone gets diagnosed with Marfan, they’re going to get put on one of these blood pressure lowering medications,” Perens said. “And they’re going to be screened regularly, at least once a year.”

So with an early diagnosis, medication and proper checkups, someone with Marfan syndrome can go about their life without having to worry too much about a life-threatening emergency springing up. But without all that, it could just be a matter of time before the worst happens.

Trey, center, celebrating his high school graduation. (Photo courtesy of Marcus Robertson)

I’ve been something of an early bird ever since my days in the Air Force. Naturally, I woke up before my brother on Sept. 28, a Monday. I knocked out some classwork, and before long, his alarm went off and he got up. We played a few songs on Rock Band together, drank some coffee and talked about how much fun we’d had on Friday with my new friends from school.

When it was time for one of my Zoom appointments that day, he went back to playing guitar on Rock Band — “Panama,” by Van Halen. He had a distinct head-bob he’d do while playing that song and only that song. I could see his hair whipping and waving to the beat in my peripherals.

When my appointment finished, he had already stopped playing for a few minutes.

“I have a really bad headache,” he said, clutching the right side of his head.

I grabbed him some ibuprofen. He took it and went to lay on his bed, waiting for the headache to pass. I decided to take a shower.

I’ve always showered at a leisurely pace — ask anyone in my family, and they’ll tell you it’s true (probably with more than a hint of exasperation). Sept. 28 was no exception; after I washed my hair, I let myself enjoy the warm water for a while.

I heard Trey’s voice a couple of times. Yelling at a videogame, I thought. The headache must’ve passed quickly. After a few more minutes, I turned the water off.

I heard my brother’s voice again immediately.

“Marcus, I need a doctor,” he cried out.

I got dressed, though I could’ve done it faster, and I went to him. He was huddled over the toilet, vomiting and crying in pain. My pulse seemed to magnify, but it didn’t quicken. I tend to stay cool in a crisis, but I could feel my little brother’s terror. I tried to project a sense of calm, to alleviate his fears by treating this like no big deal.

I walked to the kitchen and grabbed the first cup I saw, a stainless steel Yeti tumbler. I filled it with water, walked back to the bathroom and set it beside him.

“Drink some water,” I said. “It’ll probably help.” 

He nodded weakly, reached out to grab it, pulled it in and took two sips. Then he set it against the wall, behind the toilet to the left and heaved.

I called our mom, not wanting to act too hastily and incur a crippling ambulance bill that could be avoided. I’ve always been acutely aware of how poor we were; even as a kid, I’d refuse to let our parents buy snacks and drinks for me anytime we stopped at a gas station on the way back from church.

Money might seem inconsequential in a crisis, but worrying about my parents’ finances is a deeply ingrained reflex. It kicked in hard that day.

Mom assured me, though, that this seemed like a true emergency, so I hung up and called 9-1-1.

In the 12 minutes that passed before the ambulance arrived, I packed a bag with some of Trey’s essential belongings: phone, wallet, charger, deodorant, toothbrush, toothpaste and a change of clothes. I tried to keep him talking. He quickly lost the ability to stand or walk, sprawled out on the floor by the toilet. His answers became shorter and quieter. Eventually, his eyes quit opening and he quit speaking. I kept trying to get him to talk.

“Can you still hear me, Trey? Is it worse? Better? The same?” I asked him.

His mouth moved a little, but no sound came out. Then I noticed his right hand rocking back and forth. Trey was making the signs for “yes” and “no” in American Sign Language, determined to stay in communication with me.

His right hand quit moving before the paramedics ever got to us. 

As they rolled him away, strapped into a wheelchair, I lingered for a moment. Through all the commotion of lifting his 6’2” body into the chair, there sat the stainless steel Yeti tumbler, undisturbed, still full of the water I poured for him.

I couldn’t bring myself to touch it; it sat there, where Trey left it, for four months.

Trey suffered a catastrophic brain hemorrhage — not an aortic dissection — but that’s sort of irrelevant. What really killed him was the fact that none of us knew he had Marfan.

Trey, left, and the author, celebrating Christmas in 2019. (Photo courtesy of Marcus Robertson)

“A lot of people don’t know anything about Marfan, and that includes doctors,” DeAnda said. “When I worked in New York, I can’t tell you how many people found out they had Marfan the morning they woke up after surgery.”

But most who don’t know that they live with Marfan syndrome never wake up again after getting to that point. Eileen Masciale, chief operating officer of the nonprofit Marfan Foundation, said it happens all too often.

“Jonathan Larson, who wrote the Broadway show ‘Rent’ — he didn’t know he had Marfan,” Masciale said. “He goes to the hospital for chest pain, they don’t think ‘aortic dissection.’ They think something much more benign, like food poisoning. Take two pills, go home, you know, kind of thing. And he died at home alone.”

Doctors with little experience treating Marfan syndrome sometimes miss the diagnosis because they’re focused on one particular part of the body. In those cases, it can be easy to overlook signs of Marfan that show up elsewhere.

“The signs that are easy to see are long arms, legs and fingers,” Perens said. “A curved spine, which is scoliosis, having an abnormal chest bone that either sticks in or sticks out; flexible joints, flat feet, crowded teeth or stretch marks. Those would all be signs that would suggest someone should be evaluated.”

But if doctors can miss the signs, how is anyone supposed to catch it? DeAnda said that genetic testing has come a long way, but it’s still expensive — and Marfan syndrome is rare enough that it doesn’t make sense to test everyone. Instead, it’s often the people in the Marfan community who tip others off to get screened for the condition.

“There was this blog post that we posted last week about a woman who was shopping in Costco,” Masciale said. “Somebody [at the store], a stranger, asked her if she’d heard of Marfan, and so she went to get checked out. And she needed surgery, aortic surgery, and then her mother and sister got diagnosed and one of them needed surgery.”

A family photo of the author, right, Trey and their sister. (Photo courtesy of Marcus Robertson)

 So spreading awareness is the most important thing anyone who knows about Marfan syndrome can do.

My family and I are talking with our doctors about Marfan now, and we’re all going to be tested for it soon. We’ve already reached out to a few other family members with some of the same signs, too. It was a painful way to find out, but at least now we know. We can look out for it.

“What happened to your brother is the wrong way to get diagnosed,” Masciale said, referring to Trey. “The idea is, diagnose early, and not at autopsy. Really, I mean, it shouldn’t be happening still. Shouldn’t be happening.”

When it’s diagnosed early, modern medicine has a proven roadmap for treating Marfan. But the fact is, those living with the condition will almost certainly need medication and frequent doctor visits. In America, that can mean sky-high medical bills. 

“Marfan is a genetic disorder, right? I would guess it’s an expensive thing to treat, with a high morbidity,” said DePaul University law professor Max Helveston, who teaches healthcare and insurance law. “So before the [Affordable Care Act], insurance companies would never insure anyone who they knew had it. Or they could say, ‘We’ll issue insurance to you, but you have to pay a ton.’”

A 2018 study published in the health economics journal Value in Health found that the average cost of a common outpatient visit for those with Marfan syndrome was $1,412. Marfan patients who needed inpatient care stayed in the hospital an average of nearly eight days, with an average cost of $22,477 per visit. 

Trey, back left, in a family photo dated March 2020. (Photo courtesy of Marcus Robertson)

“What you typically saw was, people with very chronic conditions would not be able to get access to private insurance,” Helveston said. “They would either forgo treatment for whatever they have, which is awful, or they would be bankrupted by it. So basically, if you were chronically ill, or had a serious, long-term condition, it was just like, you’re doomed to poverty.”

Since the passing of the Affordable Care Act, however, those with Marfan have largely no longer needed to choose between bankruptcy and foregoing treatment. And thanks to the 2008 Genetic Information Non-discrimination Act, neither employers nor insurers can discriminate based on someone’s genetic composition. That includes the genetic mutations that cause Marfan syndrome.

So once someone is diagnosed, they can rest easy knowing that there are proven treatments for Marfan syndrome, that there are specialists around the country, and that health insurance is available. But that’s not the end of the story for those living with it, nor for those whose loved ones do.

“It’s also important to have quality of life,” Masciale said. “What happens between the doctor’s appointments, you know? It’s about connecting with community.”

Trey, second from the right, smiled for a family photo. (Photo courtesy of Marcus Robertson)

The Marfan Foundation provides that in many ways, both online and in person, Masciale said. The Marfan Foundation has a chapter near Chicago, and there are other support groups in communities around the country and on social media. 

“You don’t want to suffer by yourself,” Masciale said. “And you’re not a patient, unless you’re in the hospital. You’re just somebody who has Marfan. It doesn’t define you. One of the doctors said in one of our recent webinars that you are not your genetic code. You are a person, you have a condition, deal with it, take care of it. Pay attention to what the doctors say, and live a great life.”

“You don’t have to do it by yourself.”

I picked up that steel tumbler off the bathroom floor the other day. Trey won’t be finishing the water I poured him, but he’s not done affecting this world.

I’ll make sure of it.

34 Comments

34 Responses to “Marfan syndrome made my brother beautiful. Then it killed him.”

  1. Collette Phillips on March 15th, 2021 5:26 am

    Well done. Thank you for sharing, son. So ready to crank this Marfan Syndrome awareness into high gear and make some noise about it.
    As financially tough as things were for us all when you guys were younger, we were so fortunate to have an excellent health care plan with great coverage. Had we known, the bills would have been covered. We were rich in that department, but far, far richer in love.
    Excellent work.

  2. Kristine on March 15th, 2021 7:38 am

    Marfan syndrome….my son was worked up for this syndrome at 13 y.o.. it has distinct characteristics. Long extremities. Our pediatrician made the decision to have nik see a pediatrician cardiologist, he also had a pediatrician orthopedics because of his loose goosy shoulders. Which is a sign.
    Another sign is the caved in breastbone.

    What killed your brother really, were ignorant peraditricians. Poor or otherwise children have to be vaccinated and examined before going to school.

    From 13 til 21 my son several specialists to make sure that Marfan would not get the best of him.
    Yes we are fortunate.
    Im.sorry for your loss.

  3. Lorraine Vance on March 15th, 2021 8:14 am

    I am so so sorry for what happened! How sad!!! What a sweet person!! I know he is missed greatly.

  4. Kim Kay on March 15th, 2021 8:27 am

    Thank you for sharing your pain and loss. I had never heard of this and I will always be aware since reading your story. Prauers for comfort for you and your family.

  5. Kendra Wallace on March 15th, 2021 9:42 am

    First, I am SO sorry for your incredible loss. This article had me ugly crying for so many reasons. My son, now 6 , is incredibly blessed with an early diagnosis. We thankfully live in an area with amazing doctors who understand Marfan Syndrome. I am with you in spreading awareness and talking about Marfan Syndrome so that no one else has to find out from an autopsy.
    I blog, share and raise support for the Marfan Foundation. I will continue to do so in honor of Trey, your precious brother; for my son Wesley; and for all the others who have Marfan Syndrome (especially those undiagnosed!). Much love to you and your family.

  6. Patrick on March 15th, 2021 10:01 am

    I suffered an aortic aneurysm in early 2020. If if i didn’t live so close to the hospital, I likely wouldn’t be here today. While I don’t have Marfan’s, I do understand the need to listen to one’s body and get checked if something doesn’t feel right. The road to recovery was long, but I feel for the family.

  7. Berta on March 15th, 2021 10:42 am

    So sorry for your loss. Your article is so appreciated. I show, some of the signs and am so Thankful for all the information and awareness you have brought in your article. Your Brother was lucky to have you. God bless you and your Family.

  8. Pam Howlett on March 15th, 2021 11:09 am

    Our daughter was diagnosed with Marian when she was in grade school. We were very concerned because she was very active in sports, especially volleyball. Luckily we had a great doctor and she had an Echocardiogram every six months to make sure The muscles surrounding her aorta weren’t being stretched. She had read about the Olympic star Flo Hyman died on the volleyball court and she had Morfan She thought that would be very romantic. As parents, we did not want that to happen to her. All through school she got her echo exam. She is a beautiful woman age 48 right now. She is 6 foot five and carries herself beautifully she earned a scholarship to Cal State and finished up at the University of Washington. She has a beautiful son who is 6 foot four. For some reason it was supposed to be hush-hush that she had Marfan. I am so glad that more people are speaking out about it. But I am so sorry for your loss.

  9. Diann on March 15th, 2021 11:22 am

    In 1983 my older brother was running through a field with his best friend to try and catch the city buss to the St. Patrick’s Day parade. He fell over and never got up again. He was 15 years old. He was 6 feet tall, gangly, long arms, long legs, inverted chest bone, high palate, had several years of braces for Severe ectopic canines. He had been complaining to our mother over the previous year that he would get chest pain during PE, he would almost black out after standing from a sitting or laying down position. My mother took him to doctor after doctor and they would say, “there there mother… there’s nothing wrong with your son, he’s fine.” Well in the midst of trauma from the sudden loss of your child, mom and dad did not request an autopsy; which would have revealed Marfan syndrome. Our family doctor took it upon himself to do months of research on my brother’s entire medical history and possible diseases that could’ve caused the sudden death of a 15-year-old boy. Several months later he came to our home and sat on the couch in our family’s living room, and explained that he was 99% certain that my brother had Marfan syndrome. He said it was likely an aortic dissection . Thank you for sharing this article! I hope and pray that this information gets spread far and wide so that somebody somewhere can catch the early signs of this scary disease. He was the only one in our family that had any of the signs and symptoms. He was my half brother. My sister, who is his full biological sister did not have any signs or symptoms but she did get her two children genetically tested, and both of them do not carry the gene. March 12, just three days ago was the anniversary of my brothers death. I was eight going on nine and now I’m 46 going on 47. The tears are fresh as I write. He will forever be in our hearts and minds.

  10. beth weickum on March 15th, 2021 12:50 pm

    Good article thank you ! We have four generations of marfan’s in my family ( I do not have it ) . My grandfather died at 28 undiagnosed, My mom lived to be 75 ( died iin 2019) but she was treated for marfan’s . My sister died unexpectedly at age 47 (2020) her aorta dissected earlier then most she had just made it to Stanford but didn’t make it into surgery . I am happy Marfan’s is being discussed more and people are discovering it. It isn’t a death sentence but it does have some debilitating effects on the body. I am so sorry about your brother , it’s so difficult and my heart goes out to you and your family .

  11. Betty Clark on March 15th, 2021 2:09 pm

    I was a nurse and a fan of Abraham Lincoln. I was familiar with the symptoms of Marfan’s. My husband was 6’2”, always thin, myopic, had long, long legs and very long fingers . In 1995 he had a heart attack. On exam in the ER the Dr. thought he might have an aneurysm. I said that I’d wondered if he could have Marfan’s. The Dr. said he didn’t think so. But 2 months after having triple bypass he had aortic aneurysms repair. His Father had a ruptured aneurysm and lived, but died of a heart attack a year later. My husband’s older brother died in surgery of a ruptured aneurysm. Their younger brother just had surgery to repair one. My son is reaching an age where he will need checking. I believe he has had at least one check so far.

  12. Lou Amerson on March 15th, 2021 9:41 pm

    My youngest son had those features. Could not gain. He was 6 feet 4 inches at 20 years old. Size 13 shoe. All of my family was tall and so was his grandparents on his dad’s side. So I thought that’s what it was, but this old family doctor told me once when he had a cold that he would not live to be 30 years old. He never told me why. But I think you guys just did! But, his ex had him killed at 20. Thank you for your info. God Bless all!
    .

  13. Terry Fore on March 15th, 2021 9:54 pm

    Thank you for sharing your heartfelt journey of loving your brother. There are so many diseases that destroy family dynamics and this is one of them.

  14. Mary M Garcia on March 15th, 2021 9:54 pm

    I read this article and I was touched by it. I’m a grandmother and my youngest grandson who is 18 yrs old has Marfan Sydrome. He is currently under doctor’s care. God bless all who have this genetic disease.

  15. Sheila on March 16th, 2021 12:45 am

    Thank you for sharing your story, my heart hurts for your lost I hope you and your family will be better soon I’ve lost my sweet daughter to cancer and it still hurts my family and I miss her so much and I know y’all miss your brother also, be strong and hang in there just reading your story it sounds like your brother was a sweet guy. I pray that GOD will keep you and BLESS you and your family always. Aloha and live Pono ❤️❤️❤️❤️

  16. Cindy Bloom on March 16th, 2021 2:32 am

    So sorry for your loss thanks for sharing your story may it be helpful to save someone else take care God bless you and your family and friends 🙏

  17. Lisa on March 16th, 2021 3:23 am

    So sorry for your loss. I understand the money problems and making the decision for care and very glad you persisted and got help immediately. ❤️❤️❤️
    I was taught in college that Abe Lincoln was a Marfan?

  18. Bryce on March 16th, 2021 8:13 am

    I’m a 32 year old gangly male. I’ve always been skinny regardless of the amount of food I eat or exercise I get. I also have pretty severe scoliosis, joint issues, and a pretty noticeable caved in right side of my chest. 9 yrs ago I had a craniotomy to remove a large blood clot in the back left sode of my brain. It wasn’t until a couple years ago that I started putting the pieces together and after some research, suspected I probably have Marfan’s. I’ve put off getting it properly diagnosed considering my previous craniotomy causes me to shy away from going to the doctor for any reason. After reading this story though I think I’ll bite the bullet and get properly checked out for it. So sorry for the loss but thank you for the encouragement to do the right preventative thing.

  19. Kevin on March 16th, 2021 1:12 pm

    Am sorry about your loss it’s tough man but just know he’s with you look forward your brother would want nothing but happiness for you and your family

  20. Tyra on March 16th, 2021 1:26 pm

    Just want to learn more about this disease.

  21. Lisa G on March 16th, 2021 3:20 pm

    You couldn’t have told the story nor beautifully. I have a metal Yeti and everyi time I use it I will think of you and your brother. I was also struck by some of the similarities with my 14 year old son. It led me to reading about the disease and after completely panicking, setting up a dr appt the same day. After the appt the dr wants to see my son for an echo, EKG, and X-ray. Maybe, hopefully my son doesn’t have it even though he has an extraordinary number of symptoms including an underlying renal disease, there is no doubt your story will save lives.
    Lisa

  22. Jenny on March 16th, 2021 5:47 pm

    I’m so sorry for your loss. This made me cry. My daughter has a connective tissue disorder. Thank you for bringing awareness to this.

  23. Charu on March 16th, 2021 5:48 pm

    Thank you for sharing your brother’s story and educating others. My thoughts are with your family.

  24. Peg on March 16th, 2021 7:27 pm

    Heartbreaking.😢

  25. Marqanette Shepard on March 16th, 2021 11:48 pm

    I learn new things everyday and I never knew this even existed. I thank you for sharing your inner feelings and your knowledge on things. I pray that the feeling soothes over time. It saddened me reading this because I wouldn’t know what to do if I lost my sibling and I honored you for caring on and educating yourself on the matter and opening up to the world. Prayers to you and your family.

    Sincerely,
    Marqanette Shepard

  26. Sue Nash on March 17th, 2021 1:38 am

    What a well done article! So sorry for your loss! Had a college dorm neighbor who had the syndrome. There wasn’t help at that time. She. Worked as a teacher for a number of years but died in her early 40’s. Brilliant woman. Long before internet, we didn’t know much of this syndrome. Thank you for sharing and informing people. I’ve often heard that Abe Lincoln had the genetic mutation, but I’m not sure people truly know. Regardless, I’m so sad your brother wasn’t one who was treated early.

  27. Michael Weamer on March 17th, 2021 6:40 am

    Thank you Marcus for this remarkable tribute to your brother Trey. This story is why we get up every day at the Marfan Foundation and work to inform as many people as humanly possible about the signs and symptoms of Marfan Syndrome, Vascular EDS, Loeys-Dietz Syndrome and related conditions. I have no doubt after reading this article and the many comments that you will save and improve lives of people you will never even meet in Trey’s honor. I would urge everyone to visit http://www.marfan.org and help us spread the word. With appreciation.

    Michael Weamer
    The Marfan Foundation

  28. Karen on March 17th, 2021 9:42 am

    Thank you for the informative article and sorry for the loss of your brother. My former daughter-in-laws family has several members with Marian syndrome. It is also believed that Abraham Lincoln had it

  29. Joyce Oyler on March 17th, 2021 9:57 am

    My kids have ehlers-donlas type4. I don’t know the difference but it has all the same traits. My first husband died in surgery he was 39 all his organs fell off. My son was 26 he died of an aortic dissection. My daughter heart fell apart in surgery she was 34. I am raising her kids. They have it to. Best of luck to you.

  30. Jamey on March 17th, 2021 3:00 pm

    So sorry what your family went through, but its inspiring to read these comments and people getting checked or their kids etc. Good deal!!
    As for the “Joyce Oyler” a lot of people ha e ehlers-donlas. People that are super flexable and gymnast, and people that are double jointed that can bend their fingers back…..my favourite midget of all time “Eric the midget” (Eric Lynch) from the Howard Stern Whack pack had it and basically killed him because his heart and organs shut down, he had type 7. The other types are pretty common.

    But speaking of the Marian…..I wonder if Howard Stern has it?? Does he even know about it?? I’m sure he has the best doctors money can buy, but still. He is all I kept thinking about as I read theough this…..his wife Beth seems like she could have it too??

    When babies are born, they should do DNA and genetic testing …that way, after a few generations die out, they ones that got tested as they were born, before they have kids and start breeding and building a life together they would each already have their info like that and see how well it pairs up, or what could happen or expect.

  31. Karen Cintron on March 17th, 2021 7:05 pm

    So sorry for your loss. You wrote beautifully!

  32. June on March 17th, 2021 9:49 pm

    What a story- my deepest condolences to all of you who have suffered such a loss. My father died of a sudden heart attack in 97. I had a question – can a person have this illness without being tall? Or is this a disease that affects only tall people? I hope that medicine can find a cure to test all children so that nobody ever has to lose their loved one in this manner. God Bless

  33. Margaret C on March 30th, 2021 10:31 am

    I was the one who figured out that my husband has Marfan syndrome. He was in his early 40s and walking around with an undetected aortic aneurysm. That is just about the life expectancy for undiagnosed people. Thankfully, we had medical practitioners that took us seriously. He got diagnosed and had an aortic root replacement. The moment my husband’s diagnosis was official, I knew my son had it as well. Luckily, he has been being treated from the age of two by the wonderful people at Children’s Hospital in Boston.
    I have walked up to strangers and ask them if they know about it. That can be a little nerve-racking, but you could save their life. The reason I ended up diagnosing my husband was because I happened to read an article that mentioned Marfans. I didn’t know what it was, so I looked it up. I went to the national Marfan foundation website, and there I saw a description of my husband.
    I have three pieces of advice. 1. Always look up words if you don’t know their meaning. 2. If you see someone who fits the description, work up the nerve to talk to them. 3. If you suspect that you or your loved one might have Marfans or one of the other genetic connective tissue disorders, do not take no for an answer from your GP. Insist upon a referral to a cardiologist who is knowledgeable about it. Any of these three things could save a life.

  34. Louise Lord on April 5th, 2021 5:03 pm

    I cannot tell you how sorry I am for the loss of your beautiful brother Trey. The tears just poured out of me and all I could think was that he did not deserve being undiagnosed. As talented as the majority of physicians are in diagnosing a condition , all too often they stop short of really delving into symptoms or soft signs and that is just such a shame. You should know that you you did the best you could for him and your brotherhood continues forever. I believe Abe Lincoln was thought to have the condition as well. Let’s bring this to the forefront and I will talk about it with friends, relatives etc so that’s awareness can be spread . Here’s to the water glass half full and you are a wonderful brother indeed!!

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