Karla - Apple Pick of the Month
Karla Elaine Fragoso is a 6-year-old beautiful and loving girl who was born a little bit premature at just 32 weeks of gestation. When she was born everything appeared normal, but after 2 months of life she started to develop muscle weakness. The doctor decided to run a test where we confirmed she was born with Spinal Muscular Atrophy (SMA) type I. Soon Karla was admitted to the hospital for respiratory failure and the doctors told us to say goodbye to our gorgeous baby because there was nothing more they could do. It was the worst thing a parent can be told, but nevertheless, miracles exist. The next day after the doctors had told us to say goodbye my daughter was just fine, smiling like nothing had happened. Though since that first day, Karla has been admitted the hospital many more times for respiratory problems.
In December 2014, she was once more admitted to the hospital for respiratory failure that had caused her lung to collapse. Karla spent the next 30 days using a tube that helped her to breathe. When the doctors decided to see if she was ready to breathe without support, Karla’s body could not manage on its own. The doctors gave us two options. Option one was to put her to sleep until she was not able to breathe anymore, meaning she would spend her last days in the hospital. Option two was to go to the operation room to get a tracheostomy. Of course, we decided to get the tracheostomy and since then Karla has been doing well.
Now we have been approved for a new medication treatment for kids with SMA, which has helped Karla tremendously. She doesn’t get sick as often as she did, she has gained mobility in her arms and legs, and her doctors have been able to decrease the settings on her ventilator and her respiratory treatments. Karla also receives OT, PT, and SP, which has given her the opportunity to develop new skills. For instance, she now uses a device to help her communicate by tracking her eyes. The device tracks her gaze and audibly speaks what Karla looks at so she can interact with other people more easily. She is also able to drive her power chair despite her physical limitations.
Karla is a child full of life, pureness, and love. She is a very smart and sincere girl. She loves going to the theater, listening to music, singing, and attending school. Her favorite color is pink and there is not enough of it in this world. Fashion is very important to her and she is very sassy; if things are not perfect or pass her approval then we must find a different solution. She wants to be a doctor because of her dad.
The biggest challenge that we will always have is that Karla will always depend on someone to get her through the day. At the beginning of this journey it was very difficult because we did not have nurses to help us out. I always had to be at home taking care of her. I was not able to work or go to school to learn English, since Spanish is our primary language, which made it very difficult for us to communicate with her doctors. Now, with the help of our nurses, therapists, doctors, family, and Supply Company we have a normal life like everyone else. My daughter attends school and now I can work and attend college. My daughter has taught us that no matter what our limitations are we can always achieve goals and have a happy life. I love to see her happy and just being and having a normal life. We are so blessed and thankful to have such wonderful people around that are now part our family.