*Lily's Story*

Our story begins in August of 2000 when we began trying to have a baby again. After losing our first child named Nathan to SMA type 1 in November of 1998 (you can see his story at www.our-sma-angels.com/Nathan ) we decided to try again. After getting pregnant in September we waited until we could have the prenatal test done before we told people we were again expecting. The only people we told was my parents (Noni and Pappy) who were very excited. We went for our prenatal test at 11 weeks pregnant. We decided to do the CVS test because it was done earlier and we could find out the results earlier and figure out how to live with SMA again and learn early how to care for an SMA child long term.

We were very comfortable with the man who preformed the test and once the test was done the waiting began. We waited, we waited, and we waited some more. It was taking forever and after 5 weeks we finally got the results..we were having a girl and NO SMA!!! We were thrilled and excited and began sharing the good information with everyone and of course they were all thrilled for us.

The pregnancy was an easy one, and I enjoyed each and every thing about it knowing it would probably be my last one. I was thrilled when she began to move around and noticed how much stronger her movements were than her brothers were. As time grew closer I began getting Ultrasounds every week because I had gestational diabetes and she would pass every test she was up against with flying colors. We decided that at 38 weeks it was time to have her because she looked so big...so off we went for our planned c-section.

She was born May 30, 2001 at 1:27 pm weighing 8lbs. and 11 1/2oz., and 18 1/2 inches long. She was perfect and was screaming, kicking, and MOVING when she entered the world. She scored very high on both apgar tests and we were thrilled with each thing she did.

She was a wonderful nurser and took to it right away, once she latched on that was it...she had the strongest suck! We stayed in the hospital for 3 days and were sent home with Lily having Jaundice just like her brother...that was only the beginning. We had to put her under the bili-lights at home and I cried because it reminded me of Nathan but of course we had a healthy child..SMA free.

As time we went on my mom and dad (Noni and Pappy) began to get concerned with her lack of movement and voiced their concern to us at my 6 week check up. We made an appointment with her Pediatrician for the next week to just take a look and see. I was in total denial..after all the CVS test was 99% accurate..how could something like this happen again? It just couldn't!

We went to the pediatrician the next week, she was 7 weeks old at the time. He checked her reflexes..they were weak but she did have some but he wasn't happy with them. Looking back I now know once again that I could see the signs but didn't want to see them...Dr. Sampson wanted to take a blood test to rule out SMA so that we could look at other things that could be wrong. I think Dr. Sampson knew but didn't want to tell us. They took her back to take her blood, I left the room because I just couldn't stand it, how was this happening again? How could I deal with it? They got the blood (a horrible thing for children with SMA) and we left the office holding my baby..my sweet baby.

For a week we had so many different feelings and that week was horrible. Finally the test came back..POSITIVE FOR SMA. We were crushed..all I could remember is screaming at the top of my lungs to God "How could you do this to us again? It just isn't fair!". How could the results be so different? How can we lose another child to this disease?

After a week or two we began to get back on our feet, of course we were still grieving but Lily still was here and needed us and so we pulled ourselves together for her. I began to get online and ask for help from other parents...and that is where we are now. I have slowly adjusted to life with SMA that is different with my first child. We didn't have time to do anything with him..and we didn't have the options then because we didn't know. Now we have the upper hand..we found out early enough to begin the preventative care needed to keep her here and healthy for a long time. After many letters and emails from moms all over who shared their stories with me of life with their children with SMA I began to adjust and realize that this wasn't the ultimate death sentence that it was before. Doctors that told us to just let our son go were not the last word on SMA. We were not going to let her die...we decided to fight this!

We began to be proactive in Lily's care, getting her g-tube early, making sure we had the machines we needed before she was in trouble and all of that has proved to be lifesaving for Lily who is actually thriving and growing. I am now a proud mother of a healthy and happy 5 year old who happens to have SMA and our story is like others out there as well. I decided to update our story because of how things have changed, when I first started out on this journey with this precious little girl my thoughts were probably like so many.....hoping for a cure! I know I am still hoping for a cure but that hasn't dominated my world anymore, I want her to happy and healthy despite SMA and so far we have been successful because Lily is one happy and healthy kid! She amazes me each and everyday with what she can do and the fight she has in her. Despite all her obstacles she has grown into a beautiful, bossy little girl who loves to take control of everything around her.

There have been so many changes since I began this journey with Lily and I am sure there will be many more through the years but I am happy to be along for the ride. Lily is the driving force and I am just happy to be her mom through it all. Both of my children, Nathan and Lily, are the driving force behind my life and has made me the person that I am today and I am deeply grateful for that. Lily just keeps growing....and for that I am deeply grateful.

If you have a newly diagnosed child feel free to contact me if you have any questions by using the button at the bottom of the page and I will be happy to give you information, you can also visit other
SMA Families here and for more information about SMA please visit SMA Support. Thank you for taking time to read our story.