BENEFITING: TEAM PHENOMENAL HOPE INC
EVENT DATE: Dec 31, 2016
We, Katrin and Axel, live in Darmstadt in the middle of Germany with our two girls Greta (5) and Henriette (nearly 2). Greta was born in December 2010, prematurely after a complicated pregnancy. When Greta was 2 years old and didn’t seem to recover from a common cold, doctors discovered that she suffered from pulmonary hypertension (PH). Greta was born with a congenital heart defect (an atrial septum defect and an anomalous pulmonary venous connection). She had two open heart surgeries so far to correct these defects. Unfortunately her pulmonary pressure still remains high, so that doctors consider the disease “idopathic”, which means a primary disease of unknown origin.
Greta is treated with oral medication since diagnosis which reduces her pulmonary pressure somewhat. Fortunately, she has been in a stable condition for most of the time: She takes part in daycare and enjoys her life. She is not as fit as healthy kids and needs more rest, but is usually in a good mood. We all try to live a mostly normal life. We try to live with pulmonary hypertension without allowing PH to govern our lives.
We love sports, especially cycling. We are delighted to be ambassadors for the Team PHenomenal Hope and to help raise awareness for PH. Our main event this year will be "Rad am Ring" in Germany at the end of august. It`s a 24h cycling race on the famous car racing course. We are proud to take part with 2 teams of 4 cyclists each, who are all good friends of ours.
We will ride as hard as we can – for Greta, for us and for the whole PH community.