My Name is Baby R.J. Morelock. I am a normal happy 8 month old baby, though my normal is different from other babies.
My mommy noticed that I wasn't moving like other babies and was worried. She would watch me sleep and noticed I wasn't breathing good and would wake me up. She told the doctors and at 2 months old, I had already been to 2 different hospitals for breathing problems.
My family decided to do everything to save my life (but also to not let me suffer, even when the doctors told my parents I should have already died). So I had my surgery in August, 2013, 1 day before my diagnoses came back positive. I was diagnosed with a disorder called Spinal Muscular Atrophy Type 1 also called SMA.
The Surgery I had was that I need to be trached to breathe, I had a G-tube to feed me since I wasn't sucking a bottle strong enough to get any food and a Nissen Wrap to stop the acid reflux (my formula was going into my lungs).
I bet most of you have never heard of SMA, even though it is the #1 genetic killer in infants under the age of 2. This disorder can't be caught. It was nothing my mommy did while she was carrying me. It is because my parents are carriers of the SMA gene. 1 out of 35 people carry this and don't even know it. Are you a carrier? Only a genetic test can tell. All my test came back normal, but the test doesn't test for SMA, it is a special test you have to ask for.
This disorder affects my voluntary muscles. Its like I am paralyzed but still have feeling. I just can't move. I try and I try. I can't roll over, lift my head, hold my head, crawl, walk, and I can't even swallowing and breath very well. You see I have type 1, the worst. So I will never be able to crawl, walk, sit up, I will lose most of my movement, but I still have my smile and the ability to make people smile back. This disease does not affect my mind, I am very smart and I focus alot with my eyes and pay close attention to what is going on around me. I love watching people, cartoons and ballons.
My mother wasn't able to go back to work and this disease has put my family in a hard situation. Its hard to ask for money, my family was raised to work for what you have. But I go to Dr appointment quite often and my parent are trying to get enough money to get me a van ($5,000) and a special needs stroller called Cuddle Bug that tilts ($2,500 plus accessories, hopefully the insurance will cover this item, just might be a long waiting list). You see, it not just me and a diaper bag. No, I hear them say "it take an Army to transport me".
See I have 24 hour nurses that have "moved in" to say to help mommy care for me. My car seat is not a normal car seat, my seat lays down. It is called the Hope Bed and its big, too big for mommy 1996 blazer. Since I have no neck control I can't sit up, I have alot of equipment that has to go with me when we travel. My equipment to travel of course is my diaper bag but I also have a Vent that helps me breath. It is heavy and bulky. This is the tubes you see hanging from my Neck, that how I get AIR. A suction machine to get that junk out of my lungs, this suck out my mouth, nose and my trach (of course we have different tips to do these different things.... can't mix them up or I will get sick). Oxygen tank, feeding machine, my pulse oximeter, back up batteries to run my vent and trust me they are pretty big batteries and they are heavy. I have my stroller for now but I will be getting a special needs stroller that just about lays down flat. My nurse needs room to work on me while mommy is driving. See, I can get what we call a plug... in my trach. That is not a good thing. I can code in a matter of seconds if they aren't watching.
I appreciate you taking the time to read about me and if you want to know more about SMA, the website I have is curesma.org. There are many of babies just like me, you just never see us out in public and if I can help raise awareness about this disorder, then I have done my purpose in life.
I know that I wouldn't have made it this far without God. He has looked after me and my family and I am truly grateful. I know they say the odd are against me, but I am a fighter and I want people to know that I am a happy normal baby. Sure, I require more help, but I think I am worth it as does my family. I appreciate all the prayers and well wishes that I have received from all over the world.
If you want to check me out you can go to my facebook page: Asking For Prayers for RJ Morelock..Thank You in advance for your time and your donation, no matter how small and God Bless you and your family for he blesses me everyday!!