Author Archive

Christian the Crusader

Christian the Crusader

written by Jacki Oleskey, Christian’s mother      Our journey began at a 20 week ultrasound that I was at because they had detected fibroids at a previous ultrasound. Before the doctor could even get to that part, we were told that there might be a problem with our son’s heart. We followed up the […]

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Posted in: Advocacy, Awareness, CHD, Heart Hero of the Month, Heart Heroes

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Super Trooper Lukas

  written by Lukas’s mother Lukas Hoeft was born June 25th 2013 via c-section. A nurse at Providence Hospital in Novi, Michigan heard a heart murmur shortly after birth. His pulmonary valve was completely fused shut. The doctors were able to administer medication to keep his bypass open that typically closes shortly after birth. He […]

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Posted in: Awareness, CHD, Education, Heart Hero of the Month, Heart Heroes

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A Journey of Unconditional Love, CHD and HOPE

A Journey of Unconditional Love, CHD and HOPE

written by Kristi Unick, Keyan’s mother Hypoplastic Left Heart Syndrome, Restricted Atrial Septum, Congenital Heart Defects.  Before early November 2009 I had never heard those words, nor did I know at that time being thrusted in to the Heart World would change and shape me as a person. On January 20th, 2010 I gave birth […]

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Posted in: Advocacy, Awareness, CHD, Education, Heart Angel, Heart Hero of the Month, Heart Heroes

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Courageous & Caring: Heart Hero Jackson

Courageous & Caring: Heart Hero Jackson

written by Stacie Orsini Jackson Thomas (J.T.) Sordi 07/10/03 – 07/26/03 In July of 2001, my husband Roman and I moved to Lewes, Delaware from Pittsburgh, PA to start our life together. He had just finished residency and we were ready to move on to the next chapter of our life. Shortly after our move, we […]

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Posted in: Awareness, CHD, Heart Angel, Heart Hero of the Month, Heart Heroes

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Superhero with a Special Heart

Superhero with a Special Heart

written by Amy, Alana’s mother Alana was born on July 22, 2011; three weeks before her due date and weighing 5 pounds, 11 ounces. She was a healthy baby (or so we thought) and didn’t even need to be in the NICU. We took her home two days later and she had no desire to […]

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Posted in: Awareness, CHD, Heart Hero of the Month, Heart Heroes

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Disability Benefits & CHD

Applying for Social Security Disability Benefits with a Congenital Heart Defect  by, Deanna Power I was born with Ebstein’s anomaly VSD. It’s actually two congenital heart defects (CHDs) in one: Not only is my right ventricle a little wonky, but I also have a small hole connecting two chambers of my heart. I needed surgery […]

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Posted in: Advocacy, Awareness, CHD, Education, Heart Heroes

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Fighting with Every Beat of Her Heart

Fighting with Every Beat of Her Heart

written by Mandi, Aubrey’s mom April 17, 2014 was the day our whole life changed. My husband, Paul, our oldest daughter Olivia, and I went in to find out the gender of our second sweet baby. We were so excited to find out that we would be adding another little girl to our family in […]

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Posted in: Awareness, CHD, Heart Hero of the Month, Heart Heroes

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Mighty Maximus

Mighty Maximus

written by Ashlen Johnson, Maximus’s father It has been almost 4 years now since the pediatrician first heard the heart murmur. Thinking about it now is pretty remarkable. We had no idea the journey we were about to embark on. Our son Maximus was a growing young kid, in the 90th percentile of everything. We had […]

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Posted in: Awareness, CHD, Heart Hero of the Month, Heart Heroes

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A Bionic Heart of Gold

A Bionic Heart of Gold

written by Alaina, Lydia’s mother October 3rd, 2011 started like any other day. I went to work at an acute care hospital in Omaha where I was an occupational therapist. I took a late lunch to go to a 2 pm doctor’s appointment, keeping my pager with me for when I would return later in […]

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Posted in: Advocacy, Awareness, CHD, Heart Hero of the Month, Heart Heroes

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Unmapped Territory: Evelyn & Ethan’s CHD Journey

Unmapped Territory: Evelyn & Ethan’s CHD Journey

                      written by Missy McDermott, Ethan & Evelyn’s mom When Keith and I married seven years ago in July of 2009, we had a path mapped out in our minds of what we’d be adventuring through together as husband and wife and as future parents.  We […]

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Posted in: Advocacy, Awareness, CHD, Heart Hero of the Month, Heart Heroes

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