This is the doctor’s office, Christian’s blood test results are back and it doesn’t look good. I need you to come into my office tomorrow so we can discuss the results.” My heart sank; I knew this was about to be the worst night of my life. So many thoughts ran through my mind. Do I tell his mom about this message? Who can I call? I knew I had to call on Jesus and he gave me a scripture that, to this day, gets me through the sleepless nights. Matthew 19:26: With man it is impossible but WITH GOD ALL things are possible. I clung to my bible that night and I cried like never before.
The next morning off to the appointment we went. Waiting was torture. I was trying not to fall apart. It took everything I had to be strong. The doctor called us in and began to explain that Christian had SMA and what SMA is. How SMA has no treatment and no cure. No treatment, no cure, we live in the United States, we are a rich, advanced nation and there is no cure? How can that be? He told us that Christian would not live past 2 years of age and that he would put us in touch with hospice. He said he was a believer in allowing people to “die with dignity”. I could not believe what I was hearing. Then I heard a piercing scream. I turned and saw his mom on the floor screaming, tears pouring down her face and I there wasn’t ANYTHING I could do. I couldn’t change a darn thing. I couldn’t fix it. I couldn’t make him better. For the first time in my life, I was powerless. Christian stared at us. My baby, my grandson, my sweet little boy, so innocent, he has no idea what was happening. We were crushed, crushed. Someone kill me, this hurts so bad. I can’t breathe. I am beside myself. I can’t cry I have to contain myself; I have to support my daughter. Please someone shake me, wake me up, this can’t be happening. This is just a bad dream. Lord, please, this is all a big mistake. The results are wrong. Unfortunately, they weren’t and that day our fight against SMA began.
Life as we knew it, or thought it would be like, was altered. The plans we had for Christian would have to change. He would not play sports like his cousin. He would not run up and down the street with the neighborhood kids. He would not skateboard, ski, sled or even be able to enjoy the snow when we traveled up North to see family. We would have to shelter him from anyone that was sick. We would have to make sure he didn’t catch a “simple” cold because that could be devastating. Christian would get around in a power chair and he would depend on us for help with everything he does. We would have to dress him, bathe him and feed him. It would take a lot of adjusting but for this little boy we were going to do it.
It was tough at the beginning. Our life has changed and for the better. We have become better people. We value life and the “little” things so much more. We appreciate Christian; we thank God for him every day. Christian has taught us to always be happy. He is sincerely a strong, courageous little guy that despite all the trials he faces, he always smiles. He is thoughtful, gentle and kind. There isn’t a mean bone in his body. He has taught us so much, especially that life is precious; we must respect it and embrace it no matter what the circumstance.
When we read about “The200Committments” it was a no-brainer. We knew we had to partner up with all the other amazing families committing to this research. We know there is strength in numbers and after speaking with Vincent, on the phone, I knew this was a family that had done their research on where our fundraising money was going. He sent me loads of information on this research and, at that moment, I knew we had to make this happen. To me Dr. Kaspar’s research is the most promising treatment option for SMA children. The fact that it is non-evasive is a plus and it appears to be simple to administer. I have read his credentials and am very impressed with him. He has received accolades from so many other families within the SMA community.
Although SMA has changed our life, we are confident that someday soon, there will be a cure and/or a treatment to combat SMA. ChristiansFight.com is honored to be a part of this wonderful cause and we will continue to fight not only for Christian but for EVERY child that has SMA. I have an amazing group of people that are part of ChristiansFight.com that are committed to raising money and we have a bunch of fundraisers planned to aid in funding this research.
Together we WILL TKO SMA!!!!!