Sophia's Story

Hi, my name is Sophia. I was born on August 29, 2012 to Jake & Loreen Klassen. My parents and my big brother Fernando were so happy when I was born. Mommy and Daddy were thrilled to show me off to our family and friends. They often said they were thankful God had blessed them with a healthy little girl. 

But I wasn't that healthy. I couldn't ever seem to get my breathing right.  Mommy noticed it too and about 2 weeks after I was born and took me to the Emergency Room. The doctors thought I just needed to grow out of it and that I needed to gain some weight and grow a bit more. So home we went.  But I still couldn't breathe right. We went to the ER several times but each time were sent back home with the same answers. Mommy and Daddy knew I was struggling to breathe. They tried to be patient and wait for me to "grow out of it" and gain some weight, but in my first 2 months of life I only gained 1 lb,8oz. 

Around this time my Mommy was having some health problems too.  On November 2 she was admitted to the hospital because of a gallbladder attack. My Mommy knew I would stop breathing at times and insisted that I stay with her in the hospital so that she could keep an eye on me. One of the nurses that was helping Mommy saw me and said, "There is something wrong with Sophia". Daddy let the nurse take me to the ER again and they took an x-ray of my lungs.  The doctor said everything was fine and that I would grow out of my breathing problems. Thankfully the nurse still felt there was something wrong with me and in the morning took me with her to get a Pertussis test done.  She told Mommy I would be back in 20 minutes but it was a long time before I got to see my Mommy again. An hour and half later the nurse and doctor were getting me ready to go to the Children's Hospital in Winnipeg. They now knew that I was very sick. My one lung was now starting to collapse and my breathing rate was that of a adult and causing my blood to be Acetic. I ended up with all sorts of tubes in me. That was not fun. But the oxygen they put me on helped. 

After having to do lots more tests the doctors finally had some answers. I was diagnosed with having multiple seizures, developmental delay, respiratory failure type II, a brain scar and being neurodegenerative. The doctors told us that I would never grow up as a healthy little girl. My brain will not grow and mature like others. Instead my brain will go backwards. 

When I was 3 and half months I had to get a tracheotomy tube put in my throat. I will never get to taste and eat food like a regular person. But this trach has helped me to grow and that is a good thing! The bad thing about the trach is it meant I had to stay at the Children's Hospital for the next 6 months. Daddy, Mommy and my big brother Fernando stayed with me a lot, but it is not the same as being at home. Finally when I was nine months old we got to go home! We were all thrilled. 

Life has not been easy.  I have had Pneumonia many times, been hospitalized several times and have to go to lots of doctor appointments. But I know that through it all my family loves me!