Maya: I’m a 27 year old outspoken Latina mother of two, and I have Marfan syndrome. I have a Masters in Public Health, with my interests being patient advocacy (especially patients with chronic illness) and maternal and child health (particularly birth issues and breastfeeding). When I’m not chasing my toddler or volunteering with the National Marfan Foundation, I love writing, watching medical dramas on TV, and playing Mastermind with my husband (I always win!).
Mark: My husband is my rock. He supports me in everything I try. We met in college, where we were both in the marching and pep bands. Mark is an electrical engineer with passions for music, nature, and gaming. He makes a mean grilled cheese sandwich and always loses to me in Mastermind.
The Menininho: This isn’t my son’s real name; Menininho means “little guy” in Portuguese. While he may be a pint sized toddler, he’s got a BIG personality. M. loves food, our cat, books, stuffed animals, and running away from Mommy. In the spring of 2010, he was also diagnosed with autism. He goes to the local special needs preschool and is making tons of strides!
Baby J: Baby J was born in Dec. 2010. He loves nursing, cuddles, and following his big brother everywhere. J also has Marfan syndrome.
May 17, 2011 at 5:35 pm
Mark – Maya & boys. What a lovely website. I enjoyed the pics. Wow – the boys are darling. Can’t wait to soon see them in person.
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May 20, 2011 at 4:34 pm
I’m glad I found your blog. I have one question. You said your youngest has Marfan Syndrom. How did they test for that? My son was diagnosed at 13, he is now almost 20. At that time I also found out that my Mitro Valve Prolapse meant I was the carrier. Even now when we take him to a new doctor they deny he has is even though he has been tested and diagnosed.
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marfmom Reply:
May 20th, 2011 at 8:35 pm
We did genetic testing. I had the test done on myself first, and they were able to find my mutation. When each of my sons was born, we had them tested for my mutation. M came up negative and J’s test was positive.
I am confused by the doctor saying that your Mitral Valve Prolapse meant you were the carrier for Marfan. MVP is found in the general population….it’s very common in non-Marfs and is often totally harmless and most people don’t know they have it. If that’s your only symptom of Marfan, that’s not enough for a diagnosis. There also are not carriers of Marfan; a person can have Marfan syndrome and pass it on, like how I have it and passed it on to my 2nd son, but a person can not carry the gene and not have Marfan; it’s a dominant disorder.
Have you contacted the NMF before? They have a list of Marfan clinics and maybe there is one near you that your son could go to, so you wouldn’t have to go through the drill with a new doctor each time.
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September 6, 2011 at 7:09 pm
Hey Maya!
Thank you so much for having this site. I am 28 years old, Latina and was diagnosed with Marfan’s at the age of 5. I have been on beta-blockers since then. I am the only people affected in my family. I am 6’1 and have alway been very proud of my height. I have some vision problems, but nothing too outstanding compared to my fellow glasses wearing friends. I am pretty much asymptomatic with the exception of a dialate aorta (4.3).
I, like those who dream of winning the lotto, dream of being a mother, but the dialation in my aorta is very concerning to my doctors. I was wondering if you have problems with your aorta and if so how was pregnancy for you?
I have always been afraid of researching my condition, because its often associated with a fatality, but I want to be informed and I want to mingle with other people with the same condition.
I hope to hear for you soon.
-jen
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October 9, 2011 at 5:20 am
I came over and checked this out from ylmb. this is a wonderful introduction to your beautiful family
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December 5, 2011 at 6:01 pm
Hey, this is kind of neat. I have Mafans, as well as Aspergers!
Your kids are adorable
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marfmom Reply:
December 5th, 2011 at 6:14 pm
Thanks!
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February 8, 2012 at 5:40 am
Hi Maya !
My name is Gayle, and I phoned in about my son when you were on Doctor Radio. Awesome website, stay upbeat and just as strong as you are, it’s how we all do our best!
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marfmom Reply:
February 8th, 2012 at 6:11 am
Thanks!
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March 30, 2012 at 4:51 pm
I am so glad I stumbled across your page! I have so many questions I’d love to ask you! My husband was diagnosed with Marfans 2 years ago along with his uncle, brother and father. We have an almost 4 yr old daughter and every time I’ve asked the doctors what they think about her having Marfans I’m told we have to wait till she older to get a diagnosis…. That’s there’s no genetic test… But there is?! How can I find out more about this? Thanks so much!
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marfmom Reply:
March 30th, 2012 at 5:04 pm
Ok I am going to email you and we’ll chat
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March 30, 2012 at 5:39 pm
Thank you!
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April 21, 2012 at 6:06 am
Hi Maya, I have Loeys Dietz syndrome. Your insight and strength on the Marfan List is appreciated. Keep doing what you’re doing!
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June 23, 2012 at 1:33 am
i wish i knew about this page before, my son thomas who is 5 now has marfan we found out when he was 2. he is the only one in the family. i love him to bit but finding it hard as he has behaviour problems and feel that i’m not getting the support. can marfan affect the behaviour too. x
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marfmom Reply:
June 23rd, 2012 at 8:40 am
Marfan does not cause behavioral problems in and of itself, but sometimes vision problems or pain can translate into behavior problems. Also, some kids with Marfan seem to have sensory processing problems, and that could appear to be behavioral problems. If you’d like to chat more about it, just send me an email!
marfmom @ gmail.com.
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July 22, 2012 at 11:18 pm
Hi Maya,
First off, you have a beautiful family! I have a question about passing on the Marfan gene. My husbands mother and brother have Marfans, could my husband be a carrier? My husband does not have any symptoms, so he was never tested. Im just curious, we are expecting our 3rd child this week and wondered what our odds might be. Thank you for your time.
Nancy
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marfmom Reply:
July 23rd, 2012 at 4:00 pm
Hi Nancy,
Marfan is what is caused by what is called an autosomal dominant mutation. This means that it’s a single mutation and if you have the mutation, you have the disorder to some extent (Marfan can vary widely within a family). The affected person has a 50% chance of passing on the mutation to each child. Without the mutation, the disorder isn’t present and can not be passed on. So assuming that your husband does not have Marfan, then none of your children are at risk for getting it (or at least, not at any bigger risk than the general population who have no parent with Marfan syndrome).
That said, in my opinion (and I’m not a doctor) it wouldn’t hurt to have your husband at least get an echocardiogram. Since his mother has Marfan, he could still be affected mildly. If your mother-in-law or your brother-in-law have had positive genetic testing, your husband could be tested for their mutation as well, just to be doubly sure.
Good luck, and congrats on your new baby!
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August 2, 2012 at 12:37 am
Hi Maya! I came across your site looking up Micheal Phelps, anyways, I have a soon to be 15 yr old son that has Marfans, diagnosed at age 3. He has a twin brother that does not have Marfans. Their father has it, his mother had it, her father had it, prior to that I don’t know. My son is taking a beta blocker and MSM tablets. What is MSM? It is a natural form of organic sulfur found in all living organisms (Methylsulfonaylmethane). It is awesome at strengthening connective tissues! I recommend looking into it. It’s found at health food stores. My son is the first in the family to not have dislocated lenses by age 5 or MVP by age 11. I give all glory to God.
So glad I came across your site, keep up the good work. People need someone that can relate and is willing to hear them and help them. You’re that person. Lovely family as well.
Also, anyone with Marfans or with a family member with it, you have to be your own advocate with regards to your health. My son’s father had aortic dissection in 1997 at the age of 29. When they heard it was Marfans and testing confirmed the dissection, we were told he was dying. My point is, that we had to be his advocate and literally fight for his life. He was transferred and after 13 hours of surgery, he was alive. Again, to God be the glory. Do not ever let anyone tell you there isn’t anything that can be done.
It’s better to get things checked out and dealt with immediately.
Anyways, I hope I didn’t cross any emotional lines.
Thanks.
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September 10, 2012 at 1:10 pm
Just wanted to stop by and say I found your site randomly and then realized that I graduated HS with your husband. You have a beautiful family! The time you dedicate to your site and your knowledge really shines through. Happy and healthy futures to you all
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marfmom Reply:
September 10th, 2012 at 3:39 pm
Oh how cool! I will have to let him know! And thank you
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March 11, 2013 at 3:14 am
Hi Maaya,
I am a 30 year old marfan mom of a 6 yea old marfan kid. I got to know about the marf only 5 years back when my mother had a sudden heart arrest and had to undergo an open heart surgery for the valve replacement. I had severe myopia with subluxated lenses and a dilated valve which was undetected during my childhood. My mother seems to be the carrier of it. I have undergone three eye surgery for the lenses and a couple of lazers for my retina. Even my son was detected with subluxated lenses and a dilated aorta 4.5. he has undergone a pciol vitr. 3 years back. He takes beta blocker regularly. His eye sight is much better but still has a very high power.
I have been a constant follower of your posts for a long time. Today i finally wanted to connect with you. I go through a lot of emotional ups and downs frequently. And I always wished I had somebody who could understand the situation and with whom I could share seek advice. Your posts exhibits a lot of strength which is of paramount help to many. Thanks.
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May 6, 2013 at 6:44 pm
Thank you for all this information on your website! You have a beautiful family.
My husband side of family has Marfan. Our oldest son does not but our youngest has the traits. Doctors tell us at 2 years of age, its too early to diagnose him as having Marfan. Lately, I’ve been concerned about his speech delay and all the websites about Marfan don’t mention this until I came across your website and its very encouraging.
Again, thank you for this website. God bless you & your family.
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marfmom Reply:
May 6th, 2013 at 11:34 pm
Thank you! I’m glad it has been helpful to you! Please know that via genetic testing – if that is an option for your family – that 2 is not too young to diagnose. My son was diagnosed at birth thanks to genetic testing. Without testing, regular monitoring is recommended, including echocardiograms and eye exams.
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