Joseph Homer

as told by Penny Homer

This is about my 36 year old son Joe who passed away in January 2009. On Christmas day we were advised that he was going to die. When we spoke to the pulmonologist, he advised us of the diagnosis. He also told us that there was only one treatment that possibly could help, which would cost $25,000 and was available at Shands, but he wasn’t sure they would take his insurance, which in fact was true. When asked what more could be done and how long, he advised he could live like this a week, a month, or 5 years. Joe was in the intensive care unit (ICU) for 5 weeks and struggled just to live. I could not do what a mom needs to do and get him the help he needed. We brought him home with HOSPICE and he died 4 days later.

When I found out about PHA, which was maybe 2 weeks later, I sent for information. Unfortunately it came too late to help him. I have vowed that no other family should go through what I did. PHA has been so supportive; we have no support group here in Ocala. Through PHA I found out there is hope, there is medication and Joe maybe, just maybe could have lived longer. He left behind a beautiful loving wife, a 2 year old son and friends from all over the county. He touched so many lives. I want to help give hope to other families.


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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.