Spinal muscular atrophy type one, a terminal disease that were fighting with the new FDA approved drug. This is a nerve and muscle disease. Brooklynn had lost all movement from the neck down BUT is slowly regaining movement again. Now she is able to use her arms, has better head control and trunk control. She is not strong enough to push a pedal with her foot or to steer a steering wheel.
Brooklynn is absolutely amazing! She is the definition of the word joy and shows us every day that she’s a fighter. Shortly after birth, even though she was born absolutely normal, we noticed her legs becoming weaker and weaker. After extensive testing we were told of her terminal condition and we may only have a few weeks left with her. We fought hard for Brooklynn and she fought right along with us. That first year was the hardest, being in the hospital for over 100 days. But this year has been better! So many amazing things have happened that we didn’t know if we would ever see. After being paralyzed from the neck down, we noticed an index finger movie after starting this new drug called Spinraza. She will be on this drug for the rest of her life. It is a spinal injection that is given every four months. She is the bravest little girl that I know. It has been very hard to find toys that she is able to fun play. As she’s gotten older and stronger we have found a few things that she loves, but what little girl doesn’t want the car to drive around. Her diagnosis does not affect the brain at all. She is 100% mentally the as she’s gotten older and stronger we have found a few things that she loves, but what little girl doesn’t want a car to drive around. Her diagnosis does not affect the brain at all. She is 100% mentally aware of everything. Santa this year brought a little VW bug car. We weren’t sure if she would even be able to sit up in it. We had a prop blankets and pillows all around her to make it work. But to see the smile on her face was a Christmas miracle. She’s not able to push the pedal so one of us had to bend over and push the pedal and the steering wheel at the same time. I tried using the end of my mop but I just couldn’t get it to work at the right angle. My back and legs were killing me, but just seeing her smile made it all worth it. Having a car should be able to drive would be a dream come true. She was just denied for her first wheelchair and I wanted that freedom for her so bad. Every time we get her a little car out, the smile that comes across her face lights up the room. Not being able to move is something I’ve never had to deal with. Brooklynn deals with everything with such grace. But I know if she was able to have a car that she could drive, she would be on top of the world!
