Pay It Forward

We welcome Sara’s mom as a guest blogger today to share her story.

My daughter Sara was diagnosed with Idiopathic Pulmonary Arterial Hypertension (IPAH) when she was six. Pulmonary Hypertension is a chronic and incurable disease that causes the walls of the arteries of the lungs to tighten and stiffen. In someone with PAH, the right side of the heart has to work harder to push blood through narrowed arteries in the lungs. Eventually, the extra stress causes the heart to enlarge and become less flexible, compromising the heart’s ability to push blood out of the heart, through the lungs, and into the rest of the body.

Sara also started suffering from seizures at around the same time and was incorrectly diagnosed with a seizure disorder. It’s a bit of a long story, but the short version is that Sara’s seizures got worse over time, to the point where she was having them almost daily by the time she was eleven. She was hospitalized at the Children’s Hospital of Philadelphia (where she is treated for her PH), and when she was treated with emergency anti-seizure drugs, she went into cardiac arrest and had to be resuscitated. Sara’s doctors had a difficult time trying to diagnose the cause of her seizures, but they were able to determine that they were not epileptic in nature.

After six weeks, her doctors finally discovered that Sara has a secondary condition called Ectopic Atrial Tachycardia – essentially, her heart beats abnormally fast. Thankfully, with medication, that condition is completely under control now and Sara no longer has seizures. Her pulmonary hypertension has been stable for over four years and she is doing well.

Sara is a straight-A student who takes all advanced-placement classes, she is a member of the national honor society, and she works with children at a local karate studio. She is about to start her senior year of high school, and she just scored a 1410 on the SAT’s, so, she is hoping to earn a scholarship to a Philadelphia-area college (she hasn’t decided which one she wants to attend, but she has visited Drexel and plans to visit several other colleges), where she will get her undergraduate degree in Psychology, then get her Master’s degree in Child Life, with plans to eventually work in a children’s hospital.

The child life specialists at CHOP (where she has been treated since her PH diagnosis) have had such a positive impact on her life, and Sara hopes to “pay it forward” by working in the same field in the future. She loves working with children, and she feels that her own experience as a patient will enable her to truly understand the children’s point of view.

Sara’s cake was provided by Sugar Angel Darmayne Robertson with Sweet Confections Cakes in Harrisburg, Pennsylvania. Sara’s mom said, “…thank you for this wonderful program, and especially for the fact that you include siblings, who are so often excluded.”

Good Luck Sarah on your Senior year of high school from your Icing Smiles family!