This is the amazing journey that we have had with my son Aiden James.
When I became pregnant with my son it was a big change, but a good one! I loved every second that I carried him. The day he was born was the best day of my life! I loved him the second I laid my eyes on him. When we brought him home I had the normal sleepless nights, but I love being Aiden’s mom. My mother and I took Aiden to his one month check up. We had to undress him for his weight and height and the nurse asked if Aiden was always this relaxed. We looked at each other and said “yes I guess he is.” The nurse took us in the room to wait for the doctor. The doctor came in and checked him out and we asked him what the nurse meant, he said that when Aiden gets mad he should tense up his arms and legs and that he would watch him closely. So we were worried but didn’t really know what to think.
Then we started to notice Aiden not really moving the way other babies move. We took him back to the doctors for his two month check up and the doctor said he wanted us to go see a neurologist there was something wrong with Aiden and the doctor was really concerned about him. We ended up taking him to a Children’s Hospital six days later and were hit with terrible news.
Aiden has a rare and fatal disease called Spinal Muscular Atrophy or SMA for short. Its a disease that is genetic and both parents have to be carriers for this in order for Aiden to have it. If a child is diagnosed before 6 months of age the harder it is for the child to fight. The muscles waste away and your breathing becomes impaired and ultimately they die.
There are four types of this disease and Aiden has type one. They told us Aiden would not live for more then a year. We were then told that we should get a breathing tube put in his throat and also a feeding tube before we left the hospital, but they couldn’t guarantee that Aiden would ever wake up from being put to sleep. We decided to not put Aiden through anymore testing and bring him home and make him comfortable with oxygen by mouth/nose and when he can’t eat anymore to get a tube put in his nose down to his stomach so he can be feed.
Hospice has to be involved now and he is checked twice a week. We are now faced with making the hardest decisions we have ever had to make. Decisions that no one should ever have to think about! Anyone who has just seen a picture of Aiden or has seen him in person fell in love with him! Aiden has touched so many hearts and many tears have been shed because he is such a sweet and wonderful baby! We look at him everyday and think how could anything be wrong with such a precious child! My family and I are just taking one day at a time and loving Aiden every second of the day and night! Also creating as many memories as we possibly can with him! Our family is lucky to have him in our lives!
Anyone who wants to know more about SMA go to fsma.org