Double Rare
If you look at his pictures, Riley looks like an average kid (if his shirt is on). He’s small but you would never know that this child has been through all the things he’s been through and still goes through all he does.
I want people to see Riley and see there is hope. As a parent of a child with a rare condition (or conditions), you might see a statistic on a piece of paper and feel hopeless. But then I want you to see Riley, out here beating every statistic and every odd, every day.
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Connections That See Me Through
By Peter Donato
Going through all the ups and downs of having Loeys-Dietz and the physical and mental toll it can have on people can be difficult at times. The resources from the LDSF and The Marfan Foundation were vital in helping me get through my recoveries and what to expect from talking with doctors to recovery. Being able to talk to people who have gone through the same procedure and pains can be very helpful. Without the people I have met through these organizations I would not have been has relaxed and confident going through them.
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Research Keeps Me Living My Best Life
By Jannes Verheij
In 2006, we moved to another city and I was referred to the geneticists there. They just had visited a symposium where LDS had been presented and recognized some of the characteristics in me, especially my bifid uvula. A test was done and the diagnosis of LDS type 1 was confirmed. Because it was very rare at that time, my parents agreed that an article would be published on me and two others anonymously.
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Diagnosis Returned Hope to Our Family
By Sarah Moore
Over the past 15 years I have lost my mother, had a high risk pregnancy, had a brain aneurysm repaired, had a chronic dissection on a carotid artery, spontaneously ruptured a pulmonary artery, dissected both my ascending and descending aorta, had a coronary artery fail, and I’m now waiting on a surgical date for the repair of an aortic root aneurysm. Without my Loeys Dietz Syndrome diagnosis I don’t know that I would have survived all these things.
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My Daughter is My Hero
By Stephanie Vargas
My daughter Jenacee was diagnosed with Loeys Dietz Syndrome when she was 4. I remember feeling scared, and helpless. From the moment she was born my mom instincts told me something was wrong, Jenacee was born with club feet, and her left eye partially closed (ptosis).
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A Shining Light of Hope and Change for the Future
By Brandon Crawford
I like to tell people I'm one of the first in the world to be diagnosed with Loeys-Dietz syndrome. In 2006 I had my first major surgery, a valve sparing aortic root replacement. In the last 15 years I have enjoyed getting to know new patients and gaining life-long friends, lasting relationships. I've learned to be a shining light of hope and change for the future.
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Remember to Celebrate
By Courtney Jensen
Since 2005, my care has been coordinated with the recommended annual screening and interventions. The management guidelines, research, and publications supported by the ongoing efforts of the LDSF has continued to be a steadfast resource.
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Seasons Change, and I Have Hope!
By Beth Utz
I look back, excitedly holding my newborn baby, juxtaposed with the feeling that something isn’t right. Mothers know when things aren’t quite right. And. I. Knew. What I did not know, was that this new journey would take me on a completely different path than I ever imagined, and teach me lessons far greater than any book I would read.
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Every Little Bit Adds Up
By Arnold and Lucy Padilla
Our commitment to be involved with the Loeys Dietz Syndrome Foundation stems from our personal experience. Our grandson, Noah Padilla has Loeys Dietz Syndrome. He has had twelve surgeries thus far and we have been there for him every step of the way. We choose to be involved in fundraising not just for Noah, but for all individuals (and their families) suffering with this syndrome. Sometimes we think we have to do big things to make a difference. This is simply not true! Just remember that it all adds up! Every little bit.
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An Act of Empowerment
By Gavin Marcus
After accepting that there's always going to be complications down the road, I found that my world didn’t grow smaller like I feared it would. Instead, it expanded. How I chose to overcome these ‘bumps in the road’ have defined who I have become.
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I Became a Fighter
By Anne Accardo
I was born and raised in New Orleans, LA. I just made the big 40 in June and I could not be more excited! My 30s were a mix of the absolute worst and unbelievably best times of my life.
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Our Community is Family
By Kristy Moser
For us, the LDS conference is a home coming. We belong. We are family. We know that no matter what we are welcomed. This conference in June will be our third.
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My Beautiful Wide-Eyed Girl
By Carol Cheng
This month marks the 14th anniversary of the identification of Loeys-Dietz syndrome. It also marks the 7th anniversary of my daughter Aileen’s death from a ruptured aortic aneurysm at the age of 24.
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The Founding of the Loeys-Dietz Syndrome Foundation
By Kate
As a previous Neonatal Intensive Care Nurse when Mo was born in 1995, I longed for a place to connect with others as well as find the most up-to-date information in the care of my daughter.
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Care Based Upon Strong Facts
By Dr. Hal Dietz
I was initially trained as a pediatrician and a cardiologist. I was quite happy participating in the care of individuals. But simply became frustrated that what we were doing at the time didn’t seem to be making a difference.
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