Friday, October 23, 2009

Lori Hoogewind

My "Freaky Friday" Hero!

Meet Lori Hoogewind, she is a woman suffering from Neurofibromatosis. Lori developed one of the largest NF related tumors ever recorded. Beginning small, then turning cancerous, Lori underwent radiotherapy, which had a devastating side affect.
The treatment cause the tumor to grow....and grow fast. Within months the tumor had grown so large, and leached itself onto different blood supplies, that the doctors were fearful to remove it, for fear it would kill Lori.
Lori didn't give up, however. She was determined to find a doctor that would help her! She wasn't going to lay back and let the NF rob her from her greatest gift, of being a mother...a wife.
"I missed the little things in life that I had once taken for granted," Lori says today. "But most of all, I missed being a mom. Toward the end, Nina couldn't even sit on my lap, because I would sit down and my lap would be gone."
After many doctors refused to treat Lori, she got in touch with Dr. McKinnon. His team put together a plan of action for Lori's surgery. The removal of the tumor took hours, and required many many units of blood. The tumor that was removed weighed 176 pounds! Amazing since Lori, only weighed about 120 pounds!
Lori recovered and is living at home with her husband and daughter!

14st tumour
Lori fought until she was heard, and I'm so happy that she did. Giving up was not an option for her. She wanted to live! She is my NF Hero.


  1. one of my biggest fears that the tumor I have on my lower spine will grow to look like that...because of it's position the doctors don't want to remove for fear of doing more damage then good. So for now I live with the pain which most of the is tolerable

  2. My nuerofibromatosis includes 2 spots on my brain.

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