Twenty one years ago my family and I were hopeless and looking for answers of why I kept getting life threatening infections. For the first nine years of my life I fought for my life time and time again. We had already been gone all around NC trying to find a doctor or hospital and had even traveled to Houston, TX in hopes to help us find answers of what was wrong with me. Two weeks before my ninth birthday I laid in a hospital bed fighting to stay alive once again. My body had developed two massive infections which caused the amputation of my left leg and hip, and even after the amputation doctors were only giving me less than a 3% chance to live. My parents and I were more desperate for answers than ever. We needed answers, we needed someone to help us.
Twenty one years ago I was introduced to the National Institutes of Health in Bethesda,MD. For years hospitals and doctors would say "We don't know what's wrong with Mandy, her body is further advanced than medicine, we have to wait for science to catch up to her" and then Dr. John Gallin walked into my life. He was the first to say "I'll help you, we're going to figure this out." It took us 14 years of research, tests, blood draws, experiments, and prayers to get us to the day when Dr. Gallin sent an email that said "We know the basis of Amanda's (yes in the medical world I'm known as Amanda) problem". I was 23 years old when we finally found out about my IRAK 4 gene mutation. We had gone 23 years not knowing what was wrong with me and not knowing why I kept getting sick until that glorious revealing day in May. Dr. Gallin didn't care that it took he and his team of doctors, scientist and researchers 14 years; he knew that he helped save a life and a lot of sanity.
There is no cure or treatment for my defect so I'm still being studied at the NIH. Before I started being studied there doctors had never been this far into the immune system before and by further science just to figure out what's wrong with me they have been able to find out about other disease like lupus, heart disease, arthritis and certain type of cancer. How awesome is that?!?!? And 3 years ago I became "the Face of Hope" for the new department of the hospital for undefined disease program. Until three years ago there wasn't a place that people that had no idea what was wrong with them could go. It was a blessing that Dr. Gallin took my case, because the NIH had never studied undefined disease before. But now they do! I'm so blessed and honored to represent the NIH.
About two months ago I got a call from Dr. Gallin. He asked me if I would please come up and help film two videos for the hospital. One is for new patients or patient recruitment video. The other was for an award the Clinical Center was winning but that's all they were allowed to tell me at the time. Well I would like to reveal what all of that was about. The NIH Clinical Center has won the 2011 Lasker Foundation-Bloomberg Public Service award!! There is a nice write up about the clinical center on the Lasker website but to kind of sum it up they are winning it for serving since its inception as a model research hospital — providing innovative therapy and high-quality patient care, treating rare and severe diseases, and producing outstanding physician-scientists whose collective work has set a standard of excellence in biomedical research.
I'm leaving today to head to NYC for the Lasker Award Luncheon with Dr. Gallin. I am so blessed to be apart of such an amazing hospital. "For I know the plans I have for you declares the Lord, plans to prosper you, not to harm you, to give you hope and a future"-Jeremiah 29:11 God knew even before I was born that He had this plan for me. He knew that we would struggle to find someone to help us find out what's wrong with me but He knew He would have His hand on me to guide us through. He knew that mine and Dr. Gallin's paths were going to cross and together (including the NIH team) we would help further medicine. When I see that big picture and when I realize that God chose me for this job, I'm brought to tears. He trusts ME enough, He loves ME enough, and He made ME like no one else in the world....it truly brings me to tears. I'm in complete awe of His works.
When we are in the middle of storms (like my infections) we don't understand why bad things happen. We don't see the big picture, as humans we usually only see the here and now, it's hard to look passed anything else. But now sitting here piecing my life's puzzle together and see the works that God has done and is doing I sit in amazement. He knew the whole time, He had this all mapped out. I will forever trust and love Him like no other because He holds true to all of His promises. He has plans for me, bigger plans than I've ever dreamed....he's not trying to harm me (even though some after hearing my history may disagree) and knowing that gives me so much hope for my future! Cheers to the NIH!!
Please watch the this video....you might know someone in it twice!
And if you'd like to read more about my hospital and the Lasker Award visit