Maya: I’m a 26 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. He also has Asperger syndrome, Type 1 diabetes, and celiac disease.
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’s got therapy 7 times a week now and is making great improvements!
Baby J: Baby J was born in Dec. 2010. He loves nursing, sleeping, and being held. 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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