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51 donations

This fundraiser ended on 08/01/12

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The family and friends of Malik Naser are uniting to raise money for his bone marrow transplant. Your support is greatly appreciated!

This page is dedicated to Malik, my nephew and one of the greatest things in my life. I have seven nieces and nephews that I adore more than anything in this world, but Macky and I have always shared a special connection. See, when he first started talking I was in his face so often that he kind of thought all his aunts were named Nina. That was over 5 years ago now and wow does time fly.

Mac and I also share a love for music. There’s nothing he loves more than learning about new artists and their songs. I can’t shut up about pop culture, so he always goes to his Auntie Nina for any questions. At 4 years old, he idolizes Bruno Mars. Whenever one of his songs comes on the radio, he yells at anyone who tries to sing along with him. I gave in and bought him Bruno’s album, and let’s just say my sister kind of wants my head on a plate. For his birthday last September, he got a piano, guitar, and microphone stand. I’ll have to post videos up because that is sight you don’t want to miss. He’s going to be big one day, I can feel it.

When Malik was about a year and eight months, My sister started to notice that the white of his eyes were yellow. She took him for a routine visit and mentioned to the doctor of what she noticed. He then recommended a series of blood tests. After all the blood work results were in, the doctor asked her to see a hematologist. Malik was later admitted to the hospital, and we then
found out some really terrible news. He was diagnosed with beta thalassemia. In this condition the lack of beta protein in the hemoglobin is great enough to cause a moderately severe anemia and significant health problems, including bone deformities and enlargement of the spleen. Usually when he got sick, he’d end up in the emergency room. This was pretty much a once a month occurrence. His doctors are always suggesting different things to help him deal with the thalassemia. But the thing is, our family doesn’t want to provide Malik with a life where he has to grow accustomed to this; we want him cured.

A cure for Malik would benefit him in many ways. Over the past 4 years we have struggled to see him not be able to participate in activities that he would love to be a part of. It was extremely sad to hear the doctors tell them that he would never be able to participate in physical activities. He would not be able to play in any sports such as playing foot ball, running track, playing soccer, playing baseball etc. This is because of his enlarged spleen and lack of energy. Doctors are afraid of it rupturing accidentally and he could bleed internally. Everyday life in general for Malik is a struggle. Just going up stairs he is easily tired and asks to be held. I even recall when he was invited to his friends birthday party at a sports facility and the kids were playing soccer. It hurt to hear Malik say , “I want to play soccer like the other kids.”

As of last September, Mac’s been going in every 3 weeks for blood transfusions. Which is the most common treatment for thalaessimia. These transfusions are necessary to provide the patient with a temporary supply of healthy red blood cells with normal hemoglobin capable of carrying the oxygen that the patient's body needs. This was one of the hardest things, so far, I’ve had to deal with. My sister and brother-in-law finally decided to start Malik on the blood transfusions. It wasn't an easy decision for them, especially since they have been holding it off. Finally, it came to the point where the doctor's left them with two options : 1. start him on the blood transfusions, or 2. start him on another drug called Hydroxyurea. This is an anti-cancer or a chemotherapy drug. The side affects of this drug steered my sister away from this option and ultimately led to my nephew to start his blood transfusions. Once they knew that the transfusions had to begin, my sister contacted her family and asked if they could get tested. To put their mind at ease and make the decision a little easier, they wanted the blood donations coming from family. Fortunately, 5 of my 7 siblings were a match. Unfortunately, I wasn’t. It took me a while to get over the fact that, no, I wasn’t going to be playing a part in helping Macky get better. But I was happy that the process had finally begun. I do, however, make it my business to be at every transfusion.

Recently, his doctors have recommended that Macky should have a bone marrow transplant. This transplant will essentially clear his body of the thalassemia. The transplant has high success rates when the donor is a sibling. When the marrow is not completely matched the procedure becomes extremely toxic and can be life threatening. Unfortunately, Macky’s only sister is not a match. My sister has chosen to go along with in vitro fertilization, to help find a match for Mac’s bone marrow transplant. With those who aren’t familiar with the in vitro fertilization process, the procedure consists of combining an egg and sperm to create an embryo. This procedure will take many trials and the embryo transfer will not take place until one is created that does not carry the thalassemia trait and is an hla match.

We aren’t sure how many tries it’s going to take to find a match for Macky. Being that insurance does not cover in vitro fertilization, this process will be paid out of pocket. I’m setting up this page because our goal is to ensure Malik the long, healthy life he deserves and we are willing to do whatever it takes to do so. If this is my way of finally being able to help in the process of getting my little nephew healthy again, then I’m hoping to at least be successful. He is so full of life and even after all he’s been through, he always pulls through.

Your help and support will be greatly appreciated
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