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Hi, My name is Nile and I am 12 years old. I am number three in a set of triplets. I was born with Sickle Cell Disease SS. This is a blood disorder that affects my hemoglobin. The hemoglobin carries oxygen. My body makes hemoglobin "S". When my hemoglobin gives away the oxygen, some of them stick together and make long, rod shaped structures. This causes the red blood cells to become stiff and turn into a sickle shape. Because these cells can't pass through my veins like your regular blood cells, they just stick together and stack up and cause blockages that deprives my organs of oxygen. So, during all of this I began to experience episodes of severe pain. This can also lead to tissue and organ damage, strokes and possibly death. I have had too many pain crisis!
Since birth I have been in and out of the hospital. Since moving to Virginia 7 years ago, i've experienced a couple of acute chest syndromes which were not pretty. One even was so bad I had to be in the PICU for a whole week. In the last 2 years i've become VCU's frequent flyer. Everybody from the ED to the hospital floor knows me personally. Even the security guards! This is not the place where you really want to become the best of friends with people, cause hospitals are yuck.
Sickle Cell has not allowed me to do what my brothers do. Well, I can do everything that they do just not as long or intense as them. If I ride my bike it can only be for 15 minutes then I've got to take a break for 20 minutes and rest and drink lots of water. i've never been able to learn how to swim because the cold water will cause me to go into a pain crisis. I love football just as much as the next guy but have never been able to play because it is a rough sport and to exhausting for my body to handle. When I was 4 and 5 years old my mom let me play soccer (the coach was a paramedic). When we were 7 we played basketball. I only got to play each quarter for 10 minutes. My soccer uniform and basketball uniform were always clean...no playtime.
My mom has been my biggest advocate. She is always in the hospital with me and always praying. My dad too. She wont allow me to be with anyone who does not understand how to manage my care when not with her. Sometimes we don't get to do a lot of family fun stuff like trips because I'm usually sick and in the hospital or we leave and I get sick while away. I can't wait until we are able to just go away and have super fun. Maybe we can take a family cruise when this is all over.
My brothers are pretty cool about this whole thing. When we were younger my mom said she would know when a pain crisis was coming because one of them would start crying about hurting. They have always looked out for me and made sure when we are playing outside that I got rest and fluids. They bring my work home from school and help me with it also. Now that I have been feeling pretty crummy, they have just sort of decided to chill in my room with me instead of hanging outside and doing other stuff. They are not going on the 7th grade field trip because I can't go. Like I said, they are the coolest brothers ever. I will really miss hanging with them when I go into the hospital for my BMT. It will be a long separation.
I am in the 7th grade at L. Douglas Wilder Middle School. This school year has been the worst year ever. I haven't been in school that much. I have missed school since January 22nd. I am completely homebound for the school year. I do like my homebound teacher because she is really nice and does a lot to help me out with my lessons.
I have been on a treatment for 3 years now that is supposed to lessen my pain crisis but it hasn't. Because my condition has not improved my Dr. said it is now time for a Bone Marrow Transplant. Since I'm a triplet my brothers were tested to see if they were a match for me. Fat chance! We are so different! How about that for triplets. So, the next step was finding an unrelated donor. Oh yeah, my baby sister wasn't a match either. My parents and friends hosted a big donor drive for me and it was so cool to see all those people who came out to join the bone marrow registry. About 3 weeks later 2 perfect matched donors were found. I've been back and forth for the past few weeks for lots of test. Now i'm all set for the big day. My donor will have her rmarrow harvested soon and i"ll get my transplant. Sweeeet!
I am so looking forward to getting this behind me and being a teenager. All the things I could not do before because of this disease, I'll be able to do after this transplant.
Pray for me and my family. It has been a big challenge for us all.