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Monday, December 3, 2018

GoFundMe Campaign - Noor and her Beta Thalassemia Disorder



Christmas and the holidays can be really tough on some people.. it's even tougher for Noor as she is on a continuous battle with Beta Thalassemia Disorder.  The highlight is that there IS a chance for a cure and her to live the normal life that she deserves. Even a single dollar can make all the difference.  

If so inclined, please click on this LINK to donate - information is below regarding her story and this disorder.  This is the story of my good friend, Kalid's, cousin.  If you cannot donate, please help spread the word and bring a little cheer to a girl who so desperately needs it.

Thank you for your time. 💓



Noor was born with a blood disorder called Beta Thalassemia Major. This condition requires her to receive 2 blood transfusions a month. Thalassemia causes Noor to have pale skin, weakness and fatigue. Noor does not gain weight or grow at the expected rate for children her age, even delaying her puberty. While blood transfusions are a temporary solution, Noor’s body has started to build up iron which will eventually result in liver, heart and hormone problems and eventually death. This disorder runs in Noor’s family and she has already lost 4 of her cousins so far at ages ranging between 14-18 years old. Noor may have a few months to a few years to live if left untreated.

 Beta thalassemia is a blood disorder that reduces the production of hemoglobin. Hemoglobin is the iron-containing protein in red blood cells that carries oxygen to cells throughout the body.

In people with beta thalassemia, low levels of hemoglobin lead to a lack of oxygen in many parts of the body. Affected individuals also have a shortage of red blood cells (anemia), which can cause pale skin, weakness, fatigue, and more serious complications. People with beta thalassemia are at an increased risk of developing abnormal blood clots.

The signs and symptoms of thalassemia major appear within the first 2 years of life. Children develop life-threatening anemia. They do not gain weight and grow at the expected rate (failure to thrive) and may develop yellowing of the skin and whites of the eyes (jaundice). Affected individuals may have an enlarged spleen, liver, and heart, and their bones may be misshapen. Some adolescents with thalassemia major experience delayed puberty. Many people with thalassemia major have such severe symptoms that they need frequent blood transfusions to replenish their red blood cell supply. Over time, an influx of iron-containing hemoglobin from chronic blood transfusions can lead to a buildup of iron in the body, resulting in liver, heart, and hormone problems.

Thalassemia intermedia is milder than thalassemia major. The signs and symptoms of thalassemia intermedia appear in early childhood or later in life. Affected individuals have mild to moderate anemia and may also have slow growth and bone abnormalities.

Treatment

Medicine has made it possible to permanently treat conditions similar to Noor’s. It is a simple procedure that starts with chemotherapy.  A stem cell transplant then occurs with stem cells extracted from Noor’s mother. This treatment is expected to cost anywhere from $350,000-$800,000 and can be performed at King Faisal Specialist Hospital and Research Centre located in Saudi Arabia where Noor currently lives. Noor’s family’s annual combined income is around $17,000 which makes it beyond impossible for her family to afford the treatment. This is her only chance at survival.

About Noor

“My name is Noor. I am 14 years old. I was born in Syria- in a small city named Idleb. I have 1 sister and 1 brother. I love my family. I am the youngest and baba’s favorite. When I was younger, maybe 5 years old, I remember feeling so tired. I could not play with my brother and sister and I stayed in bed often. My parents used to take me to the hospital and then the nurses and the doctors would hook me up to these machines. I used to be scared of needles but mama would always comfort me and tell me that she is going to buy me ice cream if I sat still. Everytime I asked my parents why am I at the hospital, this cruel place that is full of painful needles and large scary devices they would say “Noor, we are getting you new blood so you can feel better.”

I then started to understand why I need to go to the hospital to receive blood transfusions. Whenever my next visit was due I would go to baba and say “Baba, I am feeling tired. Can we go to the hospital so I can get new blood?”

A few years ago, the Syrian revolution started and my hometown became a dangerous place. We lost our house and baba said it is time to leave. We got a visa and immigrated to Saudi Arabia. 

I recently learned about this new treatment that a local hospital is offering. This treatment can cure my disorder. This means I can stop the countdown to my death. This means I can finally reach puberty and live a normal life. I can finally go to college like my brother and sister and become an actress.

But this comes at a price. A price that baba would not be able to afford even if he worked for a lifetime. 

My cousin, Kalid, who lives in America, this beautiful magical place everyone talks about. The place where Disneyland is, told me that he will start a fundraiser to raise money for my treatment. It sounded too good to be true. I instantly started to think about all the beautiful things I will be able to do if I get cured. With your help, I can finally get cured and live the normal life I deserve. Everybody deserves a chance and this is my chance so please donate.”

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