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It’s baby girl New New
Hello my name is Nahrooki. I’m 3 months and 20 days old as of today. I have a heart surgery scheduled for April 24th 2020 and my mommy needs some help so she can help me. We currently live in New York but because of my health conditions we have to move to Stanford California. There’s some special doctors out there that can help make me feel better. My mommy is ready and willing to make whatever move necessary. She’s done it before and will do it however many times it take to give me a better life. I’m not like any other baby, in fact I’m such a rare gem there’s only %1 of world’s population that has my complex intertwined conditions . Mommy and I are going to vlog/document our journey. We want to share my growth with the world and also bring awareness to other babies with critical conditions.
Battling Diseases
So let me tell you a little bit about my diseases to give you all a better understanding of the challenges I face. I was born with very complicated congenital heart disease. CHD are abnormalities in the heart that develops before birth. It’s the most common birth defect yet it’s rare that there’s fewer than 200,000 US cases per year. Everyone’s case is unique and the level of severity ranges from manageable to life threatening. Defects can involve the walls of the heart, the valves of the heart, and the arteries and veins near the heart. They can disrupt the normal flow of blood, blood flow can slow down, go in the wrong direction or to the wrong place, or be blocked completely. In my particular condition I have all these complications excluding a complete blockage (thank God). In a healthy heart the Aorta is the main artery that carries blood away from the heart and into the rest of the body. For whatever reason my heart did not develop an Aorta. My heart also didn’t develop a Pulmonary Artery. This part of the heart carries deoxygenated blood from the ventricle to the lungs, which is all part of the respiration process. A normal heart has a right and left ventricle, my right ventricle is significantly bigger than my left. In layman’s terms, I have a huge whole in my heart.
In additions to my heart complications I was born without a Spleen and my Thymus doesn’t function at all. The spleen and Thymus are two organs in the body that help produce and release white blood cells into the body to fight bacteria and infections. As a result I was diagnosed with Complete DiGeorge Syndrome 3 weeks after I was born. CDS is another rare disease, having this disease means I’m profoundly deficient in T cells and extremely susceptible to viral infections. Without proper precautions and treatments, this disorder is usually fatal by two or three years of age.
My Goal
I have a total of 4surgeries that I need to help me live a long and healthy life. 3 for my heart and 1 for a thymus transplant. Unfortunately I’m not a candidate for a heart transplant because the arteries and veins on the outside of my heart are too narrow. Think of it like the a pipe system, in order to fit the main pipe line (the heart) the smaller pipes connecting to it (arteries/veins) need to connect and fit properly (like puzzle pieces). So I have doctors have to work with heart God gave. Once I have 3 successful heart surgeries I can be possible candidate for a Thymus transplant. Right now I am not a candidate for a thymus transplant because my heart isn’t healthy enough and I’m too small. However because I don’t my thymus doesn’t function properly I have no immune system, which means I have high risk for infection during heart surgery. It’s huge catch 22. Visit my instagram page @nahrooki for a more in depth explanation.
GET TO KNOW ME!
WHEW CHILE! ISSA LOT GOING ON IN MY LITTLE BODY! I do not expect you all to understand everything but the information is there if you want to do some research. Plus my mom will be giving frequent updates and willing to answer any questions you all may have. ENOUGH of all the boring, sad, medical stuff! Get to know me because despite my medical conditions, most days I’m living my BEST HAPPY BABY LIFE! I have a very feisty personality. I AM A FIGHTER!!! Mommy was told I wouldn’t live past 2 weeks and LOOK AT ME NOW!!! No matter what obstacles I face I know there’s so many that love me and want to see me do well in life and I WILL! Mommy can be a little prideful sometimes but she’s learning it’s okay to ask for help. Even if you aren’t able to donate anything please SHARE SHARE SHARE and help me reach my goal! MOST IMPORTANTLY please send all you special prayers and positive energy my way all the love and support I can get is much needed and greatly appreciated. Follow me on IG: @nahrooki to get to know me better and see all my cute pictures.
HOW YOUR DONATIONS HELP:
Medical Bills: With the way the American Health care system is set up, not all my surgeries will be covered in full. OHS is $75,000+. Mommy currently has public health insurance and that helps but it's not enough to get me through all my obstacles. The next resource would be grants and other charities, which usually have waiting list because there's so many people in need. Medical transport for a patient with my particular condition is estimated $55,000. So even though medical bills aren't affecting my treatment right now it will eventual pill up on my mom. Last thing any parent should be worried about is if they can afford to give their child the best care that can help save their life. My medical complications are long term and will require many medications, doctors visits, physical therapy, and such once it's safe for me to go home. My social worker at Mt. Sinai is amazing by the way.
Room and board: This will be the second big move mommy will have to make so I can get the best care. Her social workers are working with her to provide housing but California is expansive as most you know and with all the stress of everything it’s important my mom has a comfortable place to rest her head. Keep in mind that after surgery is a recovery process.
Food: Yeah y’all mama's gotta eat lol and from we heard Cali is like living in Manhattan NY (mommy’s from Brooklyn) , where a bottle of water is $3.
Other Bills: I was born Dec 6th 2019 just a few months ago. Mommy’s not working right now and and even if she was we are moving to a brand new city where she’ll have to start all over again. So until she get back on her feet any help she's grateful for.
Hello my name is Nahrooki. I’m 3 months and 20 days old as of today. I have a heart surgery scheduled for April 24th 2020 and my mommy needs some help so she can help me. We currently live in New York but because of my health conditions we have to move to Stanford California. There’s some special doctors out there that can help make me feel better. My mommy is ready and willing to make whatever move necessary. She’s done it before and will do it however many times it take to give me a better life. I’m not like any other baby, in fact I’m such a rare gem there’s only %1 of world’s population that has my complex intertwined conditions . Mommy and I are going to vlog/document our journey. We want to share my growth with the world and also bring awareness to other babies with critical conditions.
Battling Diseases
So let me tell you a little bit about my diseases to give you all a better understanding of the challenges I face. I was born with very complicated congenital heart disease. CHD are abnormalities in the heart that develops before birth. It’s the most common birth defect yet it’s rare that there’s fewer than 200,000 US cases per year. Everyone’s case is unique and the level of severity ranges from manageable to life threatening. Defects can involve the walls of the heart, the valves of the heart, and the arteries and veins near the heart. They can disrupt the normal flow of blood, blood flow can slow down, go in the wrong direction or to the wrong place, or be blocked completely. In my particular condition I have all these complications excluding a complete blockage (thank God). In a healthy heart the Aorta is the main artery that carries blood away from the heart and into the rest of the body. For whatever reason my heart did not develop an Aorta. My heart also didn’t develop a Pulmonary Artery. This part of the heart carries deoxygenated blood from the ventricle to the lungs, which is all part of the respiration process. A normal heart has a right and left ventricle, my right ventricle is significantly bigger than my left. In layman’s terms, I have a huge whole in my heart.
In additions to my heart complications I was born without a Spleen and my Thymus doesn’t function at all. The spleen and Thymus are two organs in the body that help produce and release white blood cells into the body to fight bacteria and infections. As a result I was diagnosed with Complete DiGeorge Syndrome 3 weeks after I was born. CDS is another rare disease, having this disease means I’m profoundly deficient in T cells and extremely susceptible to viral infections. Without proper precautions and treatments, this disorder is usually fatal by two or three years of age.
My Goal
I have a total of 4surgeries that I need to help me live a long and healthy life. 3 for my heart and 1 for a thymus transplant. Unfortunately I’m not a candidate for a heart transplant because the arteries and veins on the outside of my heart are too narrow. Think of it like the a pipe system, in order to fit the main pipe line (the heart) the smaller pipes connecting to it (arteries/veins) need to connect and fit properly (like puzzle pieces). So I have doctors have to work with heart God gave. Once I have 3 successful heart surgeries I can be possible candidate for a Thymus transplant. Right now I am not a candidate for a thymus transplant because my heart isn’t healthy enough and I’m too small. However because I don’t my thymus doesn’t function properly I have no immune system, which means I have high risk for infection during heart surgery. It’s huge catch 22. Visit my instagram page @nahrooki for a more in depth explanation.
GET TO KNOW ME!
WHEW CHILE! ISSA LOT GOING ON IN MY LITTLE BODY! I do not expect you all to understand everything but the information is there if you want to do some research. Plus my mom will be giving frequent updates and willing to answer any questions you all may have. ENOUGH of all the boring, sad, medical stuff! Get to know me because despite my medical conditions, most days I’m living my BEST HAPPY BABY LIFE! I have a very feisty personality. I AM A FIGHTER!!! Mommy was told I wouldn’t live past 2 weeks and LOOK AT ME NOW!!! No matter what obstacles I face I know there’s so many that love me and want to see me do well in life and I WILL! Mommy can be a little prideful sometimes but she’s learning it’s okay to ask for help. Even if you aren’t able to donate anything please SHARE SHARE SHARE and help me reach my goal! MOST IMPORTANTLY please send all you special prayers and positive energy my way all the love and support I can get is much needed and greatly appreciated. Follow me on IG: @nahrooki to get to know me better and see all my cute pictures.
HOW YOUR DONATIONS HELP:
Medical Bills: With the way the American Health care system is set up, not all my surgeries will be covered in full. OHS is $75,000+. Mommy currently has public health insurance and that helps but it's not enough to get me through all my obstacles. The next resource would be grants and other charities, which usually have waiting list because there's so many people in need. Medical transport for a patient with my particular condition is estimated $55,000. So even though medical bills aren't affecting my treatment right now it will eventual pill up on my mom. Last thing any parent should be worried about is if they can afford to give their child the best care that can help save their life. My medical complications are long term and will require many medications, doctors visits, physical therapy, and such once it's safe for me to go home. My social worker at Mt. Sinai is amazing by the way.
Room and board: This will be the second big move mommy will have to make so I can get the best care. Her social workers are working with her to provide housing but California is expansive as most you know and with all the stress of everything it’s important my mom has a comfortable place to rest her head. Keep in mind that after surgery is a recovery process.
Food: Yeah y’all mama's gotta eat lol and from we heard Cali is like living in Manhattan NY (mommy’s from Brooklyn) , where a bottle of water is $3.
Other Bills: I was born Dec 6th 2019 just a few months ago. Mommy’s not working right now and and even if she was we are moving to a brand new city where she’ll have to start all over again. So until she get back on her feet any help she's grateful for.