Sunday, October 6, 2013

Emerson - Our Miracle Boy

Baby Emerson was diagnosed with BAV and AS at 11 weeks
Statistics say that a baby with BAV enters the world every 12 seconds. We also know that they are more likely to be a little boy rather than a girl. Some of them may live many years before their BAV is even discovered. Today, there is increased focus on these adults with BAV and their families.

But there is a group of babies born with BAV who need attention and intervention while still infants or children. They are very much in need of understanding, care, and advancements to help them also.

Who are these little ones, and what is done to help them? 

Statistics may help put the frequency in context, but numbers can be so cold and impersonal. They can never convey what it means to these little ones and their families to face seemingly endless doctor visits and surgery. In order to express the true meaning of BAV in infants and children, we must share their stories.

And so, with the help of his parents, here we share the story of a beautiful little baby, born just a few months ago - Emerson - Our Miracle Boy

Thank you, Nicole and Kyle, for sharing him with us.

 May we all learn the lessons
 that Emerson has to teach us
 about little ones affected by BAV,
Creating a Climate of Hope.

Journey of the Heart

Dr. Sharo Raissi, Lia Nicandrou, Arlys Velebir, Father Prodromos
At the Bicuspid Aortic Foundation, we are very touched and encouraged whenever we hear from those dealing with BAV and the complications of thoracic aortic disease. We take our mission very seriously, knowing that all around the world we share a common experience with families who have BAV and variations of thoracic aortic disease.

The story we share here, of one young man's journey seeking answers and help, spans the many miles between the island of Cyprus and southern California. It would seem highly unlikely that a young man living in a monastery high in the mountains of Cyprus would find his way to the Bicuspid Aortic Foundation. It would seem even less likely that doors would open that would make it possible for his surgery to be performed here. And critically important for this young man, he would find himself in hands that not only could deal with his ascending aortic aneurysm, but also with the strands of tissue clinging to his 13 year old mechanical valve.

His story, in his own words, is on the BAF website - Journey of the Heart .

We are very grateful that Father Prodromos has so graciously shared his experience with others,

Helping us in our mission, 
and creating a climate of hope,

Arlys Velebir
Chairman and President,
Bicuspid Aortic Foundation