Musings of a Marfan Mom

The Miracle of the MarFamily

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The perhaps peculiar – but beautiful – part of being a part of the Marfan syndrome community is the intense bond that is developed among affected families. I’ve never seen else anything like it. Every time a newly diagnosed, scared family contacts me my eyes get teary as I welcome them to the “Marfamily.” Like a biological family, we didn’t get to choose the members of the Marfamily, and in many respects few to none of us would have signed up to be a part of this group had we had the choice. However, being with, or even just talking online to, other members of the family brings about a feeling of “coming Home.” In fact, there are times I feel more comfortable with the Marfamily than I do my own biological family.

The bond we share goes beyond pleasantries and emails asking for advice on medication and activities. We keep up with each others’ doctors’ appointments, surgeries, personal trials and joys. When one person in the family is going through something, we ALL know and feel it. Keeping up with everything and the emotions that come with that can be exhausting at times, especially the more involved you get within the community.

Last week, my friend Laura died. Grief and support flooded our social networks. Though many did not know Laura (I “only” knew her online), they mourned her passing because she was one of us and even without ever talking, we’re bonded together in a way most people do not understand. Unfortunately, Laura’s death was not the only one in our community recently. Two of my dearest friends lost their babies in the fall, and there were other deaths and some intense surgeries besides. I’ve lost more friends than I care to count and experiencing this type of loss does NOT get easier with “experience.” At times it leaves me wanting to retreat and I have to step back from the Marfamily for awhile. One friend told me she is reluctant to make friends lest she lose them, and I understand that.

At this point you may be thinking, “geesh, why cultivate relationships with any of these people when it brings exhaustion, heartache, and loss?” It’s a fair question and, Heaven knows, one my mother has asked me often enough.

Yesterday morning, Danny finally had his open heart surgery to repair his mitral valve. Danny is, as I’ve mentioned before, severely affected with Marfan syndrome. In fact, two hospitals had refused to perform the surgery and many doctors had advised his mother Sarah from the start to only engage in palliative care because he surely would not live to see his second birthday. Sarah refused to accept this and quickly found herself drawn into the Marfamily. She assembled a team to give Danny lifesaving treatments, including this surgery. Although the “experts” said he should be dead, Danny sailed through his surgery. He is doing amazingly well, better than any of us could have imagined, I think. Yes, he has recovery ahead and needs continued prayers and good thoughts, but what we have seen so far is a miracle, a beautiful miracle.

And THAT my friends, is why I keep coming back to the Marfamily, why it is a community so dear to my heart. Although having a rare disorder brings sorrow, it also opens the door to countless miracles. It is an amazing thing to watch your friend’s son beat the odds. The support I’ve seen online brings a tear to my eye. The miracles are in Emri, who had a lovely 2nd birthday last week, a birthday she was given a 5% chance of seeing. They’re in E and Brody, who courageously handled intense surgeries of their own last year. They’re in the stable echo reports, the 2nd+ generation Marfs and in their parents who give birth to them, despite being told they should never have children. They’re in the adoptions, the college graduations, the Marfs who are elderly, the teenagers who can look in the mirror and say, “I am beautiful.”

How many people can say they get to truly experience these celebrations? These joys occur frequently, and they buoy me. I feel blessed to be a part of the Marfamily, for better or for worse, in sickness and in health, and I am grateful that Baby J will grow up in its loving embrace. It’s a bond different from blood but in many ways just as thick.

How do you feel about the Marfamily? What role does it play in your life?

babies with Marfan syndrom

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15 Comments

  1. Although I can’t state it as eloquently as Maya did, I feel very fortunate that we have found this “family” or “community” to be a part of. The medical and emotional support we have received for the past 18 or so years has been wonderful. We have become better people through our involvement, as slight as it has been. We have had wonderful opportunities through NMF and with traveling to conventions. Maya is right, the support of the Marf community is always there if needed, not always so with our families, who sometimes are in denial. The first conference we attended was a surreal experience as we found our genetic family. Yes, we have lost friends but they fought the good fight and we are better people for having known them.

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    marfmom Reply:

    “Genetic family”…I love that!

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  2. I’m thankful that you can find the words to express what is in our hearts Maya. I would have no one to turn to if not for my Marfamily …. as I am the only member of my family who is affected and no one else can possibly understand the highs and lows that I experience. At 56 yrs, it’s been a lifetime of symptoms, diagnostic struggles, surgeries, recoveries and/or readjusting my life to include the latest medical issue because nothing can be done. I have immediate family who cannot or will not listen to any of it ….. easier to ignore it ….. “make it go away PLEASE” is what I believe they are thinking. People do not understand chronic illness, especially one they’ve never heard of.

    This is certainly a heavy hearted time with Laura’s death. She was extremely brave to give the transplant a try.

    I can count on my Marfamily for whatever my needs may be; not so much with my blood family. Each one of you make my days brighter. Hugs.

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  3. Perfect. That was beautifully said. I have never felt so supported since I discovered the online community and our Marfamily. We really had no one before that. Family is great but they don’t really know or understand exactly what Lee goes through or might have to go through as he gets older.
    So in case I haven’t said it lately – thank you Maya for every thing!

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  4. Bravo Maya – Well said!

    I totally understand how you feel after 17 years in the Marf community after serving for 7 years in a leadership capacity I had to take a break too, but the love of the Marfamily brought us back. I also feel it now in the CDH community & have taken short breaks there too. You have to to keep your sanity. Yes, the losses hurt deeply, but it is so worth it to know such beautiful people.

    We also understand the family vs Marfamily thing. Although we have good family support as a whole & love them dearly, there is much they don’t “get” but we know our Marfamily does. :-)

    We are part of an journey none of us would want to go on, but at least we have each other! Thank you for all that you do to help SO many! <3

    Shelly & Daniel Moore

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  5. Beautifully written! We really are cousins in a genetic way! Serg looks nothing like his biological family! When we are at MarfEvents he looks like everyone there…it’s sorta weird! As a Mom with 3 boys with Marfan’s, I’m anticipating “our turn” for surgery. It is no picnic, even when they sail through. I have had to work through PTSS with therapists after my husbands surgery where he was in a coma for a week after. And my poor husband was 4 months to recover enough to drive. He suffered sever depression during that time. Our 4 small children were shuffled around family and friends and experienced a Thanksgiving, Christmas, and New Year without their parents. When we finally came home, my youngest (2 yrs) would not let me put him down…the kids were really tramatized. They are now starting to connect the dots..they will also probably have to have the same surgery Daddy did so they can live. With all that said, we are now (5 yrs later) a thriving family. Humans have a way of healing and learning and surviving. So it is when friends become family..like our community.

    I was thinking alot about how heavily I’m connected to people and the joys and losses that come with it…and a quote keeps coming to my mind..

    “It’s better to have loved and lost, than never to have loved at all.”

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  6. Maya- I believe that as usual you capture the majority of our feelings in this post. We didn’t choose to have Marfan or give birth to kids with Marfan and we probably never even imagined that in choosing to have kids we would endure so much pain and heartbreak. But it is in the support we give each other close and far that living with Marfan gets “easier’. It’s in knowing that thousands of miles away someone cries with you on the phone when you cry and can completely understand what you are feeling when no one else can that we find courage. Knowing that there’s always someone there who knows what you are feeling and that the prayers, support and advise are always plenty. Yes it’s hard living with Marfan and harder seeing your kids fight such terrible battles at such young ages but having each one of you in our life certainly makes it easier. Having the Marfamily there when everyone else walks away and crying those tears when we say good bye to one of us or the tears that come when we welcome others are all worth living because in them we have found true love for one another, compassion, laughter at times, kindness and unity, we have found that family that we have chosen on our own because the bond that unites us is so much stronger than a biological one. We have chosen to be part of this online family, have formed a community and have opted in knowing the heart break that it can cause. Too many choose to opt out of their biological families when things go wrong but we choose to stay with ours and fight even when we know it’s a battle we will loose. I wouldn’t have it any other way but to be part of this my family who cry with me and support me, who share my joys and give me words of advise, the ones who make me keep fighting and who hold my daughters close to their hearts and feel their pain and celebrate their success. I love my Marfamily!

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  7. What a beautiful post, Maya. I’m so grateful for the marfamily, and for the hinesty and willingness of everyone to share both the joys and trials of living with marfan syndrome. I feel truly blessed!

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  8. Maya . That was beautifully written . It reminded me so very much of the love & support I & many receive from my Cherubs CDH family .like you say the losses and surgeries and impending births are heavy on the heart . But without this support I as well as many could never have made it this far. My family & friends are good but noone truely understands like your Marfamily & My Cherubs family x We are blessed to all have each other . Thankyou for sharing such a well written piece . god Bless

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  9. I know Danny and his mum and have been honoured to share the last 12 months with them.Sarah is an amazing woman,who I am forever in awe of.The Marfan community is such a support to her,and even though you are all so far away the support is always there.Thanks to you all as I know what it means to Sarah to have such good friends.

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  10. We live on the other side of the world in New Zealand and being able to link into the marfan network has kept us informed, positive, supported and most importantly played a huge role in keeping our beautiful Milly (who is now 4 years old!) ‘healthy’ and ‘well’. Milly was diagnosed with ‘infantile’ marfan syndrome and our doctors, although wonderful, were very limited in their expertise. New Zealand is a wonderful country but a population of only 4 million has the odd disadvantage! We have made some absolutely amazing contacts through NMF and now, just in the past few months, there is a marfan Facebook group established in New Zealand with great people sharing their stories too.
    The best decision we ever made was making a frightened trip to the other side of the world with our 1 year old daughter to attend the 2009 NMF conference. I have tears in my eyes now thinking of the kindness, love and support we were shown. We had the opportunity to be seen by the ‘greats’ in the marf doctor world. I will never forget Dr Dietz coming in and telling us to take all the time we wanted to ask questions and he would do his best to answer every single one because we had traveled such a long way.
    Even though that is 3 years ago the legacy of that trip is playing a huge part in our lives. Dr Dietz continues to liaise with our cardiologist and thanks to his recommendations Milly’s heart surgery is still ‘on hold’. We were preparing for surgery last year but Dr Dietz recommended Milly was put on irbesartan and for the past year her heart has been very stable. Just like her aorta has done since starting high dosage losartan following the conference. Our little girl is getting bigger and stronger for whatever may come in the future.
    Thank you Maya for your blog and posting. I have read so many of your kind and wise words over the past 4 years. I wish I had come and introduced myself at the conference :) We hope to come again some day so perhaps then.

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    marfmom Reply:

    I am so glad that conference was such a great experience for you! I had heard that you were coming, and I was sorry that I didn’t have a chance to meet you. Irbersartan has been incredibly helpful to several other children I know with severe early onset Marfan. It’s amazing to me the advances we’ve seen since I was diagnosed, and I feel we are poised to see even greater ones in the next few years. :-)

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  11. It is great to hear of such a great community of support. I wish my daughter could be tied into such a network, maybe someday. She is 10 years old and was diagnosed with Marfan Syndrome in her preschool years.

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    marfmom Reply:

    Are you on Facebook, Erna? If so, why not join this group: https://www.facebook.com/groups/277572175699217/. It’s mostly moms of kids with Marfan. There are other families there with daughters around your daughter’s age! :)

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  12. I’ll look into it. Thank you for sharing!

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