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The Heath Family in Memory of Rob

Rob Roy Heath
On July 4, 2015, our father passed away at the age of 65. Although we are not sure if his ultimate death was a direct manifestation of his HHT, his battle with this disease consumed a great portion of the past 5 years and certainly left a mark on his entire adult life with daily nosebleeds. In fact it is a mark that has affected almost all of dad's family...mother, brothers, daughter, niece, and granddaughter.
I am writing as the daughter who genetically escaped HHT. I am thankful that I do not have to worry that every time I sneeze, laugh too hard, cry, or get upset that I will get a nosebleed - something my sister deals with daily. Or of a greater consequence, the complications my cousin has experienced starting at the age of 17 with her first brain aneurysm. The last 17 years of her life have seen multiple brain surgeries, internal bleeding, emergency splenectomy and complicated childbirth. I have had an uncle die from complications of spinal aneurysms and my grandmother died from esophageal bleeding -most likely AVM's.
But this is more about my dad. I certainly lost track of how many blood transfusions he received and iron infusions were almost an every other month necessity. Hospitalizations for nose bleeds that made him lose 6 units of blood, nasal cauterizations every 3 months, and a cerebral angiography. After all that, his life still ended too soon, but thankfully at peace that he did what he could. Our Poppy will be missed.

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Debra Stuart
Thoughts & prayers for your family.

New to HHT

Anne Bentley Louviere
My condolences. My oldest daughter & I just learned in Feb. 2015 that we have HHT. The nose bleeds are horrible. We have so much to learn. Wishing your family all the best that can possibly be! God Bless & Godspeed!!!

Kelly Heath
Genetics- it defines each of as us as unique, while linking us to our father and our mother. Our family is reminded of this with every daily nosebleed. It may seem insignificant to others but for those who live with HHT it is not. It’s an indicator of many other organs that are affected by this disease. My father battled this daily. My dad is a hard-working man who never gives up and he tackled this disease the same way. He has challenged many doctor s that would look head to toe to figure out where he was bleeding because they couldn’t believe one could lose that much blood with a nosebleed. He sought every treatment from the experts across the United States and made sure the rest of his family did as well. He leaves behind a brother, niece, daughter and granddaughter with this disease. Although we have differed on the best approach to stop a nosebleed, I promise I will continue to search for new treatments. I am reminded of my dad with every nosebleed, which gives me a few moments each day to remember all the valuable lessons he taught me. He taught me hard work will always pay off in the end even when it doesn’t seem that way in the beginning. He taught me to love my children and tell them how proud I am of them, because that’s what he did every time I talked to him. He also taught me even on what seems to be the worst day there’s plenty to be grateful for. I love you very much Daddy!

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