The baby you’ve been waiting for is finally here. After epidurals, contractions, pain, and agony you hear the screeches of your newborn baby boy meeting this huge world for the first time. As the sweet, young nurse lays your beautiful newborn baby down in your tired arms, you are ecstatic. Nothing could change how you feel right now. But wait, you’re wrong. As you stare and adore your tiny newborn baby, the doctors rush in to the room and swipe your new love away. Terrified, you ask the doctors what is happening. The rushing doctors reply with “Something is terribly wrong, and we will be back.” Your stomach is an empty pit and your heart begins to tear. You have no idea that the road ahead of you will be the hardest thing you've ever faced. This is exactly how my brother and his wife felt when they had their second baby, Jude earlier this month. Next, I was told from the waiting room that there were some terrible complications. The goosebumps on my neck and arms begin to rise. Doctors in snow white jackets strolled by happily as their long shifts came to an end. As I sit in the chilly waiting room filled with chairs, tissues, people, and vibrant paintings, my stomach is in knots. I feel as if my body hates me, and I'm not even the sick one. As the doctors rush through the empty halls of the Toledo hospital, my heart races. Why are they running? Is Jude okay? 

       After putting him through long tests and exams, I finally got the chance to hold the newborn baby. He is adorable. As I hold the precious baby in my arms I notice he is a dull red color. I run my fingers down his cheeks and feel the dry bumps that coat his tiny body. He continues to jolt as he hiccups for the 100th time this hour. I began to think his constant hiccups, red skin, and tiny bumps were extremely odd, but I just kept to myself and adored my new nephew.  After a few long hours had passed, we were informed that Jude had the SMA disease. SMA or Spinal Muscular Atrophy Is supposed to be a death sentence. The disease affects the motor nerve cord leaving one's body unable to walk, eat, or even simply breathe. It is very unlikely that a newborn will live with the SMA disease over two years of age. These are things we, healthy people, take for granted. I was aware that this disease was a possibility for Jude, but for it to actually happen to my family, it was crazy to me. Only every 11,000 people are diagnosed with this disease. My heart crumbled into pieces after hearing this heartbreaking news. I began to feel so sorry for my new nephew being brought into this world with such a bad start. No one deserves this disease. 

       Since there was nothing the hospital could do, they sent my family home with Jude. All I could do was sit in my room and wonder what my family will do next. Will we be moving state to state in the Mercedes RV we just bought? Will Jude live?  As I ponder these hard questions in my head, I am heartbroken. No baby deserves to be born this way. Jude didn’t choose to have the SMA disease, the SMA disease chose him. Personally, I have never been faced with anything like this. I have never had a family member be so sick, or born with such a deadly disease. This is the moment I start to question my faith.

        All we could do was pray and search for the best doctors around, fast. As we raced against time, my dad began to call around. He called every SMA doctor in the country hoping for answers, and what did he find out? Some pretty great news. At this point, we were all aware that Jude was going to die. Starting now, that had changed. We were informed that Jude could be eligible to take a shot to help the severity of this disease if he is given the shot within the first 6 months of his life. We were ecstatic to hear this news. But there was a problem, the shot is the most expensive drug in the world pricing at 2.1 million dollars per shot. Doctor visits for Jude, all around America started to take over my family’s life. As I sit in Jude’s blue nursery covered in dinosaurs, my brain is scattered. At this very moment, the phone started to buzz. My dad snatches his phone and answers in a flash. As he listens to the soft voice on the other line his face turns white as a ghost. I am eager to hear what the call was about. As my dad hangs up the phone I am hit with phenomenal news. He begins to say that Jude can get the shot, and the state will pay for everything! It is unclear when he will get the shot, but he can get it. My heart smiles. This is the best news I have ever received. 

       Watching an innocent baby suffer when they did nothing to deserve the pain is one of the hardest things I have ever been faced with. Honestly, it makes me count my blessings, and realize how lucky I am. I have always been healthy, and never thought anything of it, but after this was brought to my attention, I realized I have taken my health for granted. I know that this is just the beginning of a rocky road, but I will be proud to say my nephew is living the best he possibly could with SMA.