Hope for Jenna

I married the man of my dreams in 2004! We found out we were pregnant soon after our honeymoon and we were so happy! We have a wonderful son and he just turned 7! We hoped to have three children and were relieved when I finally got pregnant again. However, our dreams were destroyed in 2008, when at five months pregnant our son was born. He lived for one hour. He died from a birth defect incompatible with life ( not from SMA). I didn't think I would survive the loss! After two years and infertility drugs, I finally was pregnant again. We felt lightning had already struck us, so we were so hopeful that this baby would be healthy. She was watched very closely and we were told everything was going to be ok this time. I didn't believe them until I had her safely in my arms! Our girl, Jenna Hope Eichenlaub, was born perfect August 2010! We were elated! We had to make her middle name "Hope" because she restored our hope that our life was on the mend! She seemed so strong! She would hold her head up, sit up, and roll. She got up on her hands and knees and would rock back and forth. We just knew any day, she would be crawling! We waited and waited but that day never came! The doctors said it was just hypotonia and could be fixed with physical therapy! After 6 weeks and no improvement, we saw a neurologist. He said she just needs physical therapy! We went home happy that our fears were unconfirmed! Our girl was just content to sit and play, we said. She'll crawl when she is ready. Then, she could no longer raise herself up, she would fall over when sitting, and couldn't get up on her hands and knees! I was really scared! The neurologist said, "I think she has SMA. "It will take a week to find out and go home and look it up on the Internet." I thought he was crazy! How could she have a genetic inherited disease?! No one in our family has SMA! Plus, he had already told me he thought she had a metabolic disease and he was wrong about that. So, we went home and researched SMA! The more I read, the more I knew the test was going to be positive! It was a terrible week! I couldn't eat or sleep. I just cried! I waited 6 days and then finally called the neurologist. (the test was supposed to take 7 days). He told me the results. At 18 months old, our beautiful baby girl was diagnosed with SMA type 2. He told me as I was crying and grieving for my girl, " it could be worse." I realize now he was right but at that moment I didn't want to hear that. I was just thinking of all the things my girl wouldn't be able to do and how hard her life was going to be. A few minutes after that terrible call, I received a call from Children's Hospital. They said they wanted to see us the next day. They gave us our hope back. They told us that Jenna could still have a productive life and be happy. They introduced us to a family whose son was 7 and he was zipping around in his Standing Dani! We knew right then, our girl's life wouldn't be what we expected but that we were going to do everything possible to keep her as healthy and strong as she could be. We are so blessed to live in a community where people care about each other! My coworkers have had fundraisers for Jenna! Strangers have donated money! And because of those generous, caring people we were able to buy Jenna a Standing Dani! She can't walk but she can sure go fast and likes to feel the wind in her face! She is a very happy little girl and such a blessing to us! I love her so much! I hope every day a cure is found!!

"Embrace The Suck" 

To donate and help fund a cure for Jenna and her friends. Please visit www.sophiascure.org/donate  What are you waiting for/