Author Archives: Kelly Manz

Adult CHD Survivor & World Cup Soccer Champion Lauren Holiday!

August 27, 2015 was nothing short of an AMZAZING night! I am beyond honored to have been invited to the final home game and retirement ceremony for CHD Survivor and World Cup Champion Lauren Holiday. Lauren was born with an Atrial Septal Defect and Pulmonary Artery Defect. She had her open heart surgery at ageContinue Reading

Run for LITTLE Hearts

2014 was the Inaugural Run for LITTLE Hearts!!!  Over 600 people came to support the cause. In 2015, close to 800 people were there! I also love having the hundreds of virtual runners participating with us on race day from where they live! This event is for all heart families – it is OUR EVENT to comeContinue Reading

Run for CHD with my Training Programs!

Never had a reason to run….until now? Well I am here to help you raise CHD awareness all the way to the finish line! I am SO excited for the opportunity to team up with Healthy Jasmine and Snack Smart Solutions to offer you TWO FREE training programs!   8 Week Beginner Training Program 5KContinue Reading

run for LITTLE hearts

I did it! I still can’t believe it. I FINALLY pulled the trigger on my CHD Awareness Run! run for LITTLE hearts 10K/5K/Kids Dash on May 4, 2014 (Kansas City, MO) After Chloe was born in 2008, the very first thing I had wanted to do was organize a 5K for CHD. I had participated in a few 5KsContinue Reading

Heart Defects possible in Simpson-Golabi-Behmel Syndrome

What is Simpson-Golabi-Behmel syndrome? Simpson-Golabi-Behmel syndrome is a condition that affects many parts of the body and occurs primarily in males. This condition is classified as an overgrowth syndrome, which means that affected infants are considerably larger than normal at birth (macrosomia) and continue to grow and gain weight at an unusual rate. The otherContinue Reading

Heart Defects Present in Ellis-van Crevald Syndrome

What is Ellis-van Creveld syndrome? Ellis-van Creveld syndrome is an inherited disorder of bone growth that results in very short stature (dwarfism). People with this condition have particularly short forearms and lower legs and a narrow chest with short ribs. Ellis-van Creveld syndrome is also characterized by the presence of extra fingers and toes (polydactyly),Continue Reading

Atrial Septal Defect Present in TARP Syndrome

TARP syndrome is a rare condition affecting males that causes several birth defects. TARP stands for Talipes equinovarus, Atrial septal defect, Robin sequence, and Persistent left superior vena cava. Those with TARP syndrome have clubfoot deformity (talipes equinovarus) and congenital heart defects involving failure of the upper heart chambers to close (atrial septal defect). TheContinue Reading

Heart Defects possible with Peter Plus Syndrome

What is Peters plus syndrome? Peters plus syndrome is an inherited condition that is characterized by eye abnormalities, short stature, developmental delay, an opening in the lip (cleft lip) with or without an opening in the roof of the mouth (cleft palate), and distinctive facial features. The eye problems seen in Peters plus syndrome occurContinue Reading

Heart Defects Present in Kleefstra Syndrome (9q34 deletion)

9q34 deletion syndrome, also known as Kleefstra syndrome, is a rare genetic disorder. Terminal deletions of chromosome 9q34 have been associated with childhood hypotonia, a distinctive facial appearance and developmental disability. The facial features typically described include arched eyebrows, small head circumference, midface hypoplasia, prominent jaw and a pouting lower lip. Individuals with this diseaseContinue Reading

Chloe’s Law will FINALLY pass in 2013!

                          Having Chloe’s Law finally reach the Governor’s desk is the ultimate Mother’s Day gift! When I began this journey in 2009, I had no idea what I was getting myself into. I was on a mission and I jumped in head first!Continue Reading