Nya's Hope Inc.

Hi, my name is Nyaomi Hood, I am eleven years old and I was born with a genetic disorder called VLCAD. It effects all the muscles in my body including my liver, kidneys, and my heart.  Because of this disorder, I cannot break down long chain fats, which my body can’t process,. That can give me the energy I need. I can’t eat certain foods. I am always constantly in and out the hospital a lot. I probably shouldn't say this but I am use to it by now. Another thing is when it comes to outside of school activities I play the piano. I like it a lot But  because doing sports exerts a lot of muscle and energy. I find other hobbies that I can do. It causes my CPK levels to go up. Even if I have a cold I'm right back to the hospital once again. So if me alone is going through this imagine what all those other kids are going through, this is why I started this Non-profit. Because this is a rare genetic disorder and only 500 kids within the nation were born with VLCAD. I  make my candles and sell them. To help raise money to spread awareness,  I really thank God that I'm able to walk, talk and not be in a wheel chair. There are a lot of kids like me that are.  I hope you can support my cause. Your donations go to Scottish Rite for Children Hospital of Atlanta and Emory Genetics Hospital. I wanted to do this because they have helped me stay alive since I was born. Thank you for all your support 

Mission:

To bring awareness of VLCAD,  a very rare, rare disease children are born with. Literally 500 children are effected throughout the nation. Our mission is to bring awareness, find a cure, assist families with medical supplies, food and housing

VLCAD is a non-profit organization dedicated to improving the lives of people with very long-chain acyl-CoA dehydrogenase deficiency, a rare metabolic disorder that affects how the body breaks down fats. We provide education, advocacy, research, and support for individuals and families affected by VLCAD. Our mission is to raise awareness, promote early diagnosis, and advance treatment options for VLCAD. We envision a world where VLCAD is no longer a life-threatening condition, but a manageable one.