CHD Week: Cora’s Story

Today I want to talk about a little baby named Cora, and what she’s doing for babies all over the country who haven’t been born yet.

When Cora was born, she was perfect. She had a great Apgar, a mom and dad and extended family who adored her. By all indications, she was a perfectly healthy baby. But on Dec. 6th, 2009, Cora died while breastfeeding. She was only 5 days old. The coroner determined that Cora died from an undiagnosed congenital heart disease (CHD).

It was after this tragedy that I met Cora’s mother, Kristine, on Twitter and I’m proud to count her a friend. I’m in awe of Kristine. She has channeled her pain into creating the organization Cora’s Story. Cora’s Story lobbies for pulse oximetry tests to become standard for every child. They are a quick, inexpensive test that checks a baby’s oxygen levels, which can detect a CHD. Even if the pulse ox is not standard in your state, you can (and should) still ask for the test to be performed on your child between 24-48 hours after birth. I had never even heard of this test before talking with Kristine.

Why am I telling Cora’s story to all of you now? This week is Congenital Heart Disease Week. Did you know that CHD is the #1 killer of babies? Here are some other CHD facts you might not know:
- Between 1 in 70 and 1 in 100 babies are born with a CHD of some kind.
- This makes it the more prevalent birth defect.
- Many CHDs can NOT be detected on the 20 wk ultrasound.
- There are over 30 kinds of CHDs (also called congenital heart defects) known, though not all of them can be detected with any of the various types of equipment currently available.

So, what are some things that you can do to help?
- Tell everyone expecting mom you know to request a pulse ox test for her newborn!
- Blog about CHD Week and link up your blog post on Kristine’s website.
- Add a CHD awareness button to your blog.
- Check out Baby Dickey’s website for a list of other ideas (and a giveaway).
- Become a fan of Cora’s Story on Facebook.
- Send a free e-card from Punchbowl! For every card sent during the month of Feb., they’ll donate to the Children’s Heart Foundation.

The more awareness we raise, the more babies we can save!

Exercise with Marfan

It might surprise you, but exercise is really important to Marfan patients. Because we’re limited in our activities, it’s even more vital that we do what we can to stay heart-healthy. The information I’m providing has come from what I’ve been told by my doctors and what I’ve learned from the National Marfan Foundation’s website and annual conference. Any other sources are cited. To an extent, what activities are appropriate for someone with Marfan vary on an individual basis. By all means discuss any questions you have with your doctor and have real discussions about it, but remember what is ok for me might not be ok for you and vice versa.

Marfan does bring about some universal restrictions.

1) Contact sports should be avoided because of the risk of jostling the aorta and the head (which could cause lens and retinal problems). These include football, rugby, and even basketball (which carries the additional risk to the aorta of frequently stopping suddenly).
2) Isometric exercises, where you are holding your breath and straining, are quite taxing on the aorta. These include weight lifting, crunches, push-ups, and some forms of Pilates.
3) Any activity that taxes you to the point of exhaustion. There are two ways to define this. Marfs on beta blockers (atenolol, toprol) should keep their heart rates at 100 beats per minute or below; those not on beta blockers (like Losartan or verapimil) should keep below 120 bpm. The second way of knowing if you’re working too hard is to see whether you can keep up a conversation while doing the activity. If you’re too out of breath to get out a string of words, you’re probably working too hard.
4) Other questionable activities include roller coasters (risk to the eyes), rifle shooting (risk to the heart/aorta), volleyball (contact), and soccer (all of the above).

However, as I said before, there’s definitely variability. For example, soccer for 5 year olds is very different from soccer for 14 year olds. A patient without current aortic complications may have a little more leeway than a patient prepping for aortic surgery (keeping in mind, of course, that aortic complications may very well develop from repeatedly engaging in risky activities).

So, now that we’ve covered the “do-nots,” what about the “usually oks?” A variety of sports, when done in a mild to moderate manner, can be great. I swam in high school. Being in the water eliminated painful impacts on my joints and I found I was a natural at the breaststroke due to my long, hypermobile legs. I swam on the team, with heavily modified practices. I know a teen who was one of the top 25 youth archers in the country at one point. Tennis and golf can also be ok. Dr. Dietz said that even paintball can be alright, with the proper chest and eye safety equipment. The benefit of physical activities to our self-esteem cannot be overlooked!

As patients with a life-threatening illness, we have to measure the quality of our lives with the quantity of our lives. If your doctor wants you to give up something you love, don’t be afraid to have a frank talk with her. Maybe you can reach a compromise, like modified practices, or echoes every six months instead of every year. And if you can’t reach a compromise, and the activity really isn’t safe, at least you’ll know why and feel like you’ve been heard, whatever comfort that is. I hated giving up horseback riding and basketball, but I developed a love of writing and eventually came across swimming, two activities I might not have found otherwise.

Now, last week reader Erin asked me how I exercise, between the doctor-imposed restrictions and the restrictions of my own body, not to mention the time constraints associated with being a mom. I’ve written before about my chronic pain and the trouble I have breathing, due to my heart not processing oxygen quite right, and these have gradually gotten in the way of my ability to exercise.

But here’s the thing. I think that we need to be easy on ourselves and realize the best we can do is better than not doing anything. Right now, I’m doing physical therapy instead of going to the gym. I go to the hospital for this twice a week. Sure, it’s doesn’t necessarily get my heart pumping all the time (sometimes it does!) but it’s what I can do today. Eventually, it will help lessen my pain so I have the energy for other things. My therapist has done research to help me adapt the exercises to be non-isometric. On days I don’t have PT, I take the Menininho for a walk around our apartment complex or the local mall or, if he lets me, I do 20-30 minutes of the stationary bike at the apartment “gym.”

Beyond that, I schedule everything. I have my little icalendar on this laptop and I’m lost without it. Every doctor appointment, playgroup event, church meeting, phone conference, and errand gets recorded so that I don’t overextend myself. If I have a busy string of days, I take a day off as pajama day and the baby and I lounge around in our jammies all day long and read books and watch bad TV (well, I do, not him). It’s a system that’s worked out pretty well, as my pain flairs up when I’m overtired.

How do all of you (especially those of you with chronic illness) fit in the time to stay fit?

The opinions offered at Musings of a Marfan Mom are for informational purposes only and are not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of a qualified healthcare provider with any questions you may have regarding Marfan syndrome and any medical condition. Never disregard professional medical advice or delay in seeking care because of something you have read here.

Citations:
Judge, D.P., and Dietz, H.C. (2008). Therapy of Marfan Syndrome. Annual Review of Medicine, 59: 43-59.

Ammash, N.M., Sundt, T.M., and Connolly, H.M. (2007). Marfan Syndrome – Diagnosis and Management. Current Problems in Cardiology, 33: 7-39.

Raanani, E. and Ghosh, P. (2008). The Multidisciplinary Approach to the Marfan Patient. IMAJ, 10: 171-174.

Lessons Lived, Lessons Learned

Today I’m again writing with MamaKat’s Writers’ Workshop. I picked prompt #5: List 10 things you never knew until you were a mom.

1) Blueberry stains come out. Beet stains…not so much.
2) Don’t ever take for granted the power of a hot, quiet shower. Those are rare gifts.
3) Twitter is absolutely amazing. I might have mocked it before Menininho, but the women I’ve “met” over there since his birth have been lifesavers!
4) I actually enjoy being a SAHM. I thought I’d go crazy after 6 months of being at home, but my kid is pretty fun to hang out with (most of the time!).
5) That said, I’ve learned it’s vital to me that I’m not just “Mommy.” I’m happiest when I have some time to write and put my Masters of Public Health to use & in doing that, remind myself that I’m also “Maya.”
6) You know when you’re asking yourself “Hmm…wonder if he’ll hold out long enough for me to run more errand before melting down?” If you have to ask, you know the answer is “no.”
7) If you ignore the above voice in your head, you WILL become That Mom with That Kid and Those People will hate you.
8 ) Sandra Boynton is God’s gift to parents. Reciting Moo Baa La La La will keep a child from crying during shots and buy you enough peace to get a haircut.
9) Dignity is overrated. A happy baby is much more important than what some stranger might think (say, the hairdresser cutting your hair while you repeat the words to Moo Baa La La La over and over).
10) There’s nothing sweeter than watching my husband wrestle with my son.

Moms (or dads), what things have you learned since becoming a parent?

New Back Brace

It took 3 years, but I finally convinced my orthopedist to order me a custom back brace. I have a rare type of scoliosis, very flexible with a teenage onset and that continues to progress even as an adult. My specialist at Hopkins suggested bracing me 3 years ago to see if that had an affect on the progression, but my local docs always insisted on an off-the-shelf, one-size-fits-all corset brace. News flash: Men don’t have hips, but some women do and a brace that doesn’t flair at the hips isn’t going to fit such a woman. (You’d be surprised at how often [male] doctors tried to convince me that male and female bodies are actually the same.) Since these braces invariably slid off my hips and up my chest every day, I quit wearing them and my scoliosis kept progressing.

Anyway, my local, politically incorrect ortho wrote me a Rx last month for my very own custom, plastic back brace. Have you ever had one made? It involves wearing a skin tight, t-shirt material halter dress, which might be sexy if 1) it wasn’t totally see-through and 2) I had my pre-baby body of 5 years ago. So now that I’m feeling a smidgen awkward, two people come in and start wrapping me in strips of fiberglass, like I’m a giant 5th grade papier-mâché project. They were really nice about it though (mostly just glad I wasn’t a squirmy 5 year old or unconscious, the latter of which apparently happens from time to time since they wrap you really tightly).

This is me without my brace (curve: 40 degrees):

This is me once I’m braced.
It goes over the tank top and under my shirt.

Added benefit of the brace? “You won’t be able to eat those extra French-fries without loosening it up,” my doctor told me. He’s a winner, that one.

Now, I have a habit of naming things, and I think this brace needs a name. It also needs to be a masculine name because, as my friend Danielle put it, “He’ll be squeezing you tight and with you more than a stalker! He’s always got your back, and, just like a man, he is helping you feel good in the long run, but sometimes gets in the way and doesn’t look flattering with your sexy, slinky dress.”

Wonderful readers, I need your help choosing a name! So far all I can think of is Hugh (yum!) or The Situation (tell me you get the joke!). Please leave your suggestion for a name (or vote for one of those two) in the comments and I’ll choose a name in the next few days. I don’t really have any fancy prizes to offer, but if I choose your suggestion, I’ll link up to your blog if you’ve got one!

Below you’ll find some pictures of said super-sexy brace. He felt the need to show you just how awesome having a brace can be.

One Year

I can’t believe my little baby is one year old! It’s been a full year for our family and the very best part has been having our little Menininho with us. I am thankful every day for the opportunity to be a mother and I’m glad he picked us to come and grow up with.

Happy birthday, Baby. We look forward to celebrating many, many more with you.

Marfan Through a Husband’s Eyes

Today is the last installment of a three-part series: Marfan Through the Eyes of the “Unaffected.” You’ve read my story, but what about how Marfan has affected those around me?

Over New Years Mark, the baby, and I met one of my college girlfriends and her fiancée for lunch. This friend has chronic pain, worse than mine, and at one point during the meal gestured to her fiancée and remarked “Yah, I don’t even know why he’s marrying me!” Her fiancée pointed at Mark and said, “Well, he married her!”

And that got me thinking…why did Mark marry me? [I mean, besides love and all that jazz.] How did he/does he view Marfan that makes him want to stay, when it’s made other guys run away? And from there, I wondered about the effects on my other family members growing up. Aside from the medical bills (OH, those bills!), we never really discussed the impact my illness had on them.

You’ve heard from my mother and my brother. So, today I bring you my fantastic husband, Mark.

Mark and I met over 6 years ago, in college marching band, and were dating within 3 months. He was the very cutest trumpet player and leader of the band cheers. These days he’s an analog integrated circuit design engineer. In his spare time he enjoys building blocks with Menininho, experimenting in the kitchen, and playing Starcraft and TES4 Oblivion.
I always dated tall girls.

I mean, I was the shortest student my age all throughout elementary school, and the situation did not improve much in the following years. Pretty much everyone looked ‘tall’ to me. Nonetheless, I always dated tall girls.

Therefore, pictures of Maya and I from some of our early dates, when she would show up in high heels and stand, literally, head and shoulders above me, really do not seem all that unusual.

Homecoming 2005

I don’t remember when she first mentioned “Marfan Syndrome” (or, as I incorrectly called it for at least a year, “Marfan’s”), as it was never a game changer for me, just another data point. I certainly did my research, starting from Wikipedia. then going into greater detail, and reading up on resources from Johns Hopkins, The Mayo Clinic, and papers and publications by Hal Dietz. I wanted to be able to join dialogues between her and her doctors on an educated level, to be able to logically take and argue her side when a doctor brushed off an event, and to understand the many choices she made about her health.

We hadn’t been dating too long (well… 2.5 years?) when our first emergency room trip together occurred. While dancing at our university’s winter formal in downtown Cleveland, Maya began to experience a rapid and arrhythmic heartbeat, which was recorded by her Holter Monitor. Maya was engaged in an extended effort to convince her doctors that these arrhythmic episodes were something worth looking at, rather than just an example of running-up-the-stairs-too-fast; so even as I helped Maya recover, we hurried to a phone to send the results to the hospital computer. The on-call, however, gave us a surprise, saying that there was “something unusual” and told us to report right away to the Cleveland Clinic Emergency Room. Though nothing came out of the late-night-became-morning visit and we never quite learned what “something unusual” meant, the following five hours waiting, talking, and playing card games in a room at the ER turned out to be one of our most memorable and most enjoyable dates.
“Conference” was a term I had heard used with reverence by Maya ever since I first learned of Marfan syndrome. Supposedly, it was a veritable Mecca in more ways than one for the Marfs… “Someday, you’ll get to see it, Mark”. Years later, I was taken along to meet the Marfamily at the annual National Marfan Foundation Conference which was held, that year, in Boston. Unbeknownst to me, the great Marfamiliy honors marital affinity–I was now married into this family as much as any “in-law”. I was certainly an outsider to this network of camaraderie stronger than that forged between my lab-mates in the trenches of 6 AM graduate school meetings, but invited nonetheless. They danced, discussed, met, and mingled, and I saw Maya naturally slide into her role as leader, older sister, and sometimes even mother of the hundred-odd middle- to high-school aged kids gathered in the teen program.

But Marfan syndrome exists outside of the momentous occasions, as well.

Marfan syndrome’s activity restrictions have, over time, extended to the both of us in one way or another. We obviously do not hike winding trails and climb gorges like I did when I was younger, nor will long walks on the beach ever be a part of our repertoire. The opposite is true in other ways: As Maya has a limited ability to stand for long periods of time, I am on my feet from the moment I get home from work until well after the baby is asleep in bed.

Most unusual–to me, at least–is that Marfan syndrome seems to produce anger. I attended a support group for “unaffected spouses”, as they called us, at the Boston NMF Conference. The opinion there was fairly universal that the pain, limitations, and uncertainty of Marfan syndrome engendered a vague, undirected anger that seemed to creep into relationships. But, as has been mentioned by Maya’s mother and brother both, Maya began long ago and continues to take this anger and drive it, bit by bit, into her unending activism and defense of those persons and causes she takes under her wing.

We have had our share of scares from doctors, both from medical speculation (“I think she might not have Marfan Syndrome, but rather …. “), or right out misdiagnoses (“I think it’s a dissection! … oop. No it isn’t. Again.”), but they are events that we address as they come and pass as they go, rather than living in fear of them. When Maya’s geneticist speculated that she may have the life-threatening Vascular type of Ehlers-Danlos syndrome, I saw no reason why that should change the nature of our relationship. Maya and I approached the information with a similar stoicism, yet we still met the negative test results with a doubled sigh of relief.

It is because day to day life does not get to be put aside that we are able to continue; to get engaged in Washington DC, get married in Columbus, have a son, and begin to raise him in California.

Marfan syndrome makes every day harder than it could have been, but it is a part of who Maya is, through and through. And now, it is a part of me, too.

And I wouldn’t trade it for the world.

A Thoughtful Thursday

I’ve come across a few chronic illness themed articles recently that I found so thought provoking that I’d like to share them with you. All of them focus on chronic illness.

A Marf whom I admire, Angela, introduced me to this first article. Unspeakable Conversations was written by a severely disabled lawyer, Harriet McBryde Johnson. In it, the passionate disability rights activist discusses her debates with Prof. Peter Singer, a Princeton philosopher who advocates infanticide (among other things). The heart of their disagreements comes from the question of whether those with disabilities are inherently worse-off than able-bodied people.

I’ve said many times that I wouldn’t have wanted my parents to choose not to have me just because I have Marfan. But, does having Marfan make me worse-off? In some ways, I suppose that it does. I have pain that my able-bodied friends do not. I’ve been discriminated against (especially in graduate school!) based on my “disability” status. I don’t have some of the options for pregnancy/birthing/babywearing that other women have. However, I’ve had lots of opportunities that many of my friends haven’t: the chance to travel to two other countries, presenting research, completing a Masters degree, having a baby, etc. This comparison didn’t help me answer the question at hand, as it left me with an unclear answer.

I decided to remove Marfan and insert other things about me to see if the negatives still held true. Does being biracial/LDS/female sometimes make me worse-off? Have I ever been discriminated against for these things? Has anyone ever made an unfair assumption about me based on these traits? Have any of them affected my ability to make choices? I would answer yes, but I don’t think most people would say that I am worse-off for being any of those things (at least not in a “you’d be better off dead” sort of way). Therefore, I don’t think I’m worse off for having a chronic illness.

The second article is actually a website: Choices that Matter. The author, Ellen Painter Dollar, has another connective tissue disorder – osteogenesis imperfecta – as does her daughter. Her blog examines “ethics and theology of assisted reproduction and genetic screening,” as well as living with her disability.

Finally, a short essay on Aspergers syndrome that my husband, who has the disorder, wrote was featured on ScientificBlogging.com. I’m really proud of him!!!

What do you think about these articles? Do you agree with any of them? Why or why not?

Ode to Babywearing

The time has come. Menininho has finally hit 20 lbs. Because of my heart and back problems, my doctors told me before I became pregnant that once my future baby hit 20 lbs I’d no longer be allowed to carry him. This doesn’t mean I can’t do the day to day lifting into the crib, putting him into the car, etc., but I should let Mark do those things when possible and I can not wear Menininho anymore. I’m already missing it, and I hope someday to be able to wear another baby. I feel very grateful that I was able to carry my son for so long!

Shoddy Journalism

I have a Google Alerts out for articles on Marfan syndrome, and I was shocked and then angry to come across this UK Times Online article: Embryos Destroyed for ‘Minor’ Disorders. Even more upsetting to me was that the article has been picked up by several other papers and websites. I debated whether or not to blog about this, but Mark convinced me last night that the other side needs to be heard (aside from the anonymous comment I left on the article).

Let me first explain that I am not providing a commentary on pre-implantation genetic diagnosis (PGD). Whether or not I support PGD is irrelevant. My beef here is with shoddy, biased journalism.

I could tell by the title that this wouldn’t necessarily be a fair piece. Destroyed is a very emotionally charged word, and who determines what minor means?

The author, Lois Rogers, says that there is a debate because fertility regulators in Britain are allowing 100 different disorders to be screened for using PGD, “including many illnesses that are not life-threatening.” Rogers then goes on to hold up Marfan syndrome as a genetic “defect” (quotations hers) that isn’t life-threatening and (it’s implied) shouldn’t be included on the PGD list. She defines Marfan as “a congenital weakness of connective tissue that can lead to abnormal growth.” That’s it. She conveniently leaves out the parts about how Marfan causes abnormal growth of the AORTA, how it IS life-threatening, how some people with Marfan have crippling pain and must go on disability early on in life. I try to take a positive view of Marfan, and I admit I’m on the less-severe side of the spectrum, so I am always hesitant to discuss all the terrible parts of the disorder because I don’t think it’s healthy to dwell on that. However, it’s the truth: Marfan is serious stuff. I’ve lost 10 friends to complications of Marfan. Most of them were very young…2 were just teenagers. People like Rogers do our cause a disservice by minimizing the severity of Marfan.

Beyond that, this is just really poor journalism! How much effort would it have taken Rogers to research Marfan? I think she’d have found it’s actually a poor example of the point she’s trying to make. Isn’t research a journalist’s job?! And, if this article really was unbiased, it would also show the point of view of people who support PGD. The closest it comes is by Ms. Harris’ quote (who has Porphyria), but did not use PGD to conceive her children: “If you have lived with someone unable to function and on constant morphine because of the pain, you would take a different view.”

I plan on writing a letter to the editor of the Times Online about this article. We shouldn’t let anyone get away with inaccurate reporting on Marfan. If you’d like to join me (the more the merrier!), you can contact them at letters@thetimes.co.uk. Make sure to include your postal address and daytime telephone number.

Marfan Through A Brother’s Eyes

Today is the 2nd installment of a three-part series: Marfan Through the Eyes of the “Unaffected.” You’ve read my story, but what about how Marfan has affected those around me?

Over New Years Mark, the baby, and I met one of my college girlfriends and her fiancée for lunch. This friend has chronic pain, worse than mine, and at one point during the meal gestured to her fiancée and remarked “Yah, I don’t even know why he’s marrying me!” Her fiancée pointed at Mark and said, “Well, he married her!”

And that got me thinking…why did Mark marry me? [I mean, besides love and all that jazz.] How did he/does he view Marfan that makes him want to stay, when it’s made other guys run away? And from there, I wondered about the effects on my other family members growing up. Aside from the medical bills (OH, those bills!), we never really discussed the impact my illness had on them.

Last Monday you heard from my mother, and today my brother Matthew writes. My husband, Mark, will round out the series next Monday.

Matt is currently teaching 4th grade in New Orleans as part of the Teach for America program. He writes about experiences at the blog Relentless Pursuit of Acronyms. In his “other life,” Matt is a Blues musician and sports journalist.

Hi, I’m Matt, Maya’s kid brother. Unlike my sister, I am neither a mother, nor do I have Marfan. I’m 5’10, play basketball a few times a week, and can’t do any of the bizarre hand tricks that Maya can do because she has a zillion more joints than me or something. Despite me not displaying any of the physical traits of Marfan, I think its fair to say that my life has still been touched by the long, boney finger of the syndrome.

I was 6 (Maya was 8 ) when she was diagnosed with Marfan. I’d like to say that I never thought there was anything different about Maya growing up, but that just isn’t true. She was 5 feet tall when she was 8, which to me, meant she was about 13 feet tall. Despite the fact that she was alarmingly skinny, I assumed that she was going to up to be a professional basketball player, and launch our family (or at least me) into fame and fortune. I remember looking up the tallest woman in the book of world records, and then trying to estimate how long until Maya passed her. How would it be to be the female Shaq’s little brother?

Pesky details like enlarged aortas and dissection dangers didn’t really mean much to Little Kid Matt. Heck, I couldn’t tell my aorta from my armpit. I figured that since my older sister was huge, that she must be good at sports. Being a hyperactive little boy without any neighborhood kids to play with, I would insist that Maya come out and play whenever possible, much to the chagrin of my parents…and probably Maya now that I think of it, since she would have rather stayed inside, doing boring things like reading.

My parents tried to explain that Maya couldn’t be subject to the same kind of roughhousing that might be okay for other kids, but I couldn’t ever understand why…only that she had some sort of vague medial problem that gave her a huge scar on her tummy, and now she couldn’t burp.

I think Maya might have used this for leverage growing up. If we got into a fight, Maya knew that she could smack me, but I could never physically strike back. I grew to resent this a little bit. So she was tall and skinny, and she could make her fingers do this disgusting snapping sound…but from the looks of it, there wasn’t anything wrong with her right? She couldn’t be so sick that a smack in the chest could actually seriously injure her, right?

I think I started to understand things a little better when I turned 11. First, I finally studied the human body in school, and realized just how important all those parts of the body that we couldn’t see are (like the heart). Second, one of Maya’s close friends passed away due to complications from Marfan. In addition to getting an uncomfortable reminder of the mortality of humans at such a young age, the possible severity of my sister’s disorder finally sunk in. This wasn’t just something that Maya might use to get an upper hand in a fight…this could actually kill her. I remember thinking about this at night that year…wondering if something like that could ever happen to my sister.

The event was tragic, but had a silver lining, as it brought out the activist in Maya. Determined not to let something like this happen to her (or frankly, anybody, if she could avoid it), she decided to become an expert on Marfan. This meant that everybody in our house needed to become an expert too. Sure, there were times when I quite frankly did not care what possible connective tissue disorders King Tut or Abe Lincoln had…but deep down, I was impressed at how Maya chose not to mope around, and take charge of her health, even when she was quite young.

Growing up with a Marfan sibling wasn’t always easy, but we made it through pretty well by following a few simple rules. We, as a family, had many conversations about exactly it meant (and didn’t mean) to have Marfan (Matt, your sister isn’t crippled…she just isn’t going to be able to play Rugby with you in the backyard). We had a pretty strict rule about not mocking Marfan, although we weren’t so uptight that we completely lost our sense of humor over it. As siblings, we tried to find mutual activities that we could all participate in, and a lot of the time, I forgot that Maya even had Marfan.

That is, until she started doing those gross finger tricks again.