Our Journeys

"I am writing this here because I have always felt a yearning to help other young people who have lost a sibling to this disease or parents who have lost a child."

- Inga Halverson-Johnson

Memorial

Erica Elizabeth Halverson

as told by Inga Halverson-Johnson

I could write a book, however I don't believe there is space or time for it. My name is Inga, I am 35 years old and my life was drastically changed at the age of 15. That was when my 16 year old sister/best friend/only sibling was diagnosed with primary pulmonary hypertension (PPH).

Erica Elizabeth Halverson was a beautiful person who is still very badly missed. She was born on March 28, 1974 with mitrovalve prolapse (a small imperfection in her heart which was patched through open heart surgery at the age of two). She was diagnosed with PPH in March 1990 and passed away on June 17, 1990.

She did not pass away because of the disease; she lost her life because of a series of medical mistakes. She did not have a chance to try any of the medication because as they were inserting the catheter into her lung to administer it they punctured her lung and had to stop. Three days later she passed away. She was too weak to handle all of the pain medication and the vomiting the medications caused.

I am writing this here because I have always felt a yearning to help other young people who have lost a sibling to this disease or parents who have lost a child. I have spent many years working through all the feelings I had as a teenager in that position and how it changed my parents and their ability to parent me. I'd love to help parents work through the parenting of their other children after the loss of a child to this disease, or to help a young person talk about how it feels. I hope that someday people will be much more aware of this disease and there will be a cure. Perhaps someday I will write a book, however, until that day anyone who may need a friend to talk to can find me on Facebook.

God Bless you all in this very difficult journey.

Inga Halverson-Johnson

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.