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In Memory of Debbie Beaver

Debbie Beaver
In October 2011, I was called to the ICU at UVA Hospital because my mom was very ill from complications from a rare disease called Hereditary Hemorrhagic Telangiectasia (HHT). When I entered the hospital room I saw my mother on life support and several doctors looking at me with a concerned look on their face. My heart sank. They asked me about HHT and told me they did not know much about the disease or a treatment. They asked me if I could give them some insight about the disease or anything that could help. I looked at my mom laying there and knew that I needed tell these doctors the right words in order to save her. How do you do that? How do you teach someone in five minutes about a rare disease and then give them a solution to save her? The answer is you can’t and the reality is I had already lost this battle before I even entered the room.

Mom passed away before midnight. My dad and sister and I held her hand while she went home to be with our Lord and Savior. I know I can never bring her back, but I can raise awareness to prevent this from happening to someone else.

I inherited HHT from my mother and battle nosebleeds daily. I currently have 4 AVM's in my lungs and have to monitor them on a yearly basis. I have made a promise to my husband Rickey and daughter Katie that I will beat HHT.

I love you mom, I miss you every day, and don’t worry we are going to beat this thing!


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Guestbook

Together We Can Beat HHT

Anne Bentley-Louviere
My 34yr old daughter & I both have HHT and it is terrible. We are joining the fight with you & everyone out there to beat this relentless condition. God Bless & Godspeed!

HHT

barbara meccio
sorry for your loss I too have HHT but under control

United We Stand

Louis Tijerina
Debbie, I am so sorry for your loss. My mother passed away in 2007 from complications from HHT. My sister and I have the disease as well as two of our children. I promised my mother that I would continue the fight against this disease if not to save my life but my future generations. God Bless and I wish you all the best.

Raise Awareness!!

Toby Beveridge
I lost my mother (Abbey L. (Francis) Beveridge) to the disease which I also share. I will gladly join your fight to beat HHT!I did a school project and a speech to raise awareness!

Together let\'s Fight this!!!

Dorothy Kleine
I am so sorry for your loss, i too have HHT was diagnosed with it 26 years ago, I am now 50, have had 5 coil procedures I have had a total of 10 coils done in my lungs, going to get another one done in 2 weeks. I did not know until today that you have HHt there is something out there that is hht 8, meaning if you have an iron deficiency it can create blood clots, the only reason I know is I know have a blood clot in my liver. We are trying to balance out if i should go on blood thinners after my avm is coiled or should I just risk the clot or the possibilty of bleeding, my son just found out he has it too he is 28....

When HHT touches someone close to you, it's natural to want to share their story with others.

HHT is a relentless disease that affects over one million people around the world. Many of those people are robbed of the opportunities that would allow them to lead a full and normal life. Cure HHT is the only organization in the world dedicated solely to research, education, and advocacy that will allow us to find a cure for this disease. You can make a tremendous impact on our mission and honor a loved one by creating a Memorial or Tribute.

Whether your family has managed HHT for generations or you are the first to be diagnosed, everyone has a story to tell. One of the dynamics that keeps our small community so strong is the constant opportunity HHT families have to relate to one another.

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