We are making the $5K commitment in honor of our son, Nathan who has SMA type 1. Nate was diagnosed last April and our world was turned upside down. Fortunately Nathan’s neurologist never said the typical things like “Take him home and love him.” “There’s nothing we can do.” or “He will not see his second birthday.” Essentially, he gave us hope, by not taking it away.
We saw Dr. John Bach ten days after Nathan’s SMA diagnosis and he gave us even more hope! He told story after story of SMA children defying the odds with the proper equipment and protocols. He wrote prescriptions and a Letter of Medical Necessity for the LTV ventilator and Cough Assist machine and explained that the first two years would be the hardest. Keeping Nathan healthy would make all the difference in the world. We left that day with a new outlook and a new plan.
After many months of ups and downs, Nathan is thriving. I have been opened up to the most incredible group of people I never could have imagined. They are our SMA family. Without their support and advice, there is no doubt in my mind that Nathan would not be here with us today.
While we try to live in the moment, it’s hard not to think about a cure. We never felt comfortable putting Nathan on any of the experimental drug treatments. To us, there was simply not enough data to support giving our baby any of these very serious drugs. We hoped to one day “get him the stem cells,” as a friend once put it. As time went on, the Stem Cell program for SMA seemed further and further out of reach. I truly believe that maybe 10, 15 or 20 years from now, Stem Cells will be able to replace all of the various types of non-functioning motor neurons in an SMA child. But, I also hope that in that time, SMA will no longer be something that children are being diagnosed with.
In the meantime, we are choosing to focus on the very promising Gene Therapy research of Dr. Brian Kasper. If this program is successful, we can hopefully stop the progression and might just be able to stop living in fear of the inevitable every day. Gene Therapy should also be able to prevent a newly diagnosed family from ever having to watch their baby get weaker and weaker. Funding is the roadblock.
My family will be hosting a Golf Tournament on October 21st at Huntington Hills Golf & Country Club in Lakeland, FL to benefit Sophia’s Cure Foundation and in turn, Dr. Kaspar’s Gene Therapy Program. We are committed to raising $5K, but are aiming much higher!!
Kristin Banjany (Mom to Nathan – SMA type 1, 16 months old)