Katie Grace Groebner and her family lived in Mankato, Minnesota. At the age of 5 years old, Katie Grace went to the doctor for possible pneumonia. Tests and procedures resulted in a devastating diagnosis of Pulmonary Arterial Hypertension for which there is no cure. It is referred to as the \”One in a million disease\”, due to how rare it is and Katie Grace was given 1 year to live with what is now referred to as PH.
Kathy and John Groebner lead by their strong faith, refused to give in to their daughter\’s diagnosis. Since there were no treatment centers in Minnesota, they decided to sell their home, buy an RV and drive to California so Katie Grace could be treated by hopeful specialists at Stanford Lucille Packard Children\’s Hospital. Katie Grace was helped with a course of complex treatments which included a permanent PICC line implanted into her chest. She received continuous IV therapy as well as supplemental oxygen, with multiple medications. In between numerous appointments the Groebner family and the community gave Katie Grace a variety of opportunities to enjoy their lives together and Katie Grace survived the 1 year survival rate by 6 years! In 2014 Katie Grace\’s condition deteriorated and the only option left was a heart and lung transplant.
On June 14th, 2014, at the age of 12, Katie Grace finally received the rare transplant which saved her life. There are approximately 25 heart/lung transplants performed in the U.S each year. Her transplant surgery was flawless and her recovery was remarkable. The doctors could not explain how she survived with the heart they removed. There were so many miracles. Katie Grace was released from the hospital and allowed the chance to breathe and laugh and run and swim like a normal teenager. In September, about a year later, 13 year old Katie Grace went into the hospital for a check up and it was discovered that she had a cold. She then developed a cough and her lungs began to struggle. She fought hard and was strengthened by her faith and the thousands of prayers from family, friends, and her community. Prayers came in from across the country and around the world. After 3 1/2 months at Lucille Packard Children\’s Hospital, Katie Grace Groebner passed on Christmas Day surrounded by her loving family.
Katie Grace has truly been an inspiration to so many, in and around the PH and organ transplant communities. Her strength and loving spirit has been a triumph and inspiration for so many that knew her, or were touched by her story. There have been many who have followed her amazing journey. Katie Grace\’s illness has supported so many others with the same illness, offering encouragement and hope, lead by her unwavering faith and perseverance. Her very public story has shed light and awareness on a rare and devastating disease.