Marissa Monae Ledesma

I know there are a lot of you who know my daughter Marissa. There are some of you who have yet to meet her. Marissa Monae was born January 1st 1998. The day that changed my life forever. I share this story with you because I truly believe that my daughters purpose in this life is to let it be known God works great miracles. Marissa Monae was diagnosed with Cloacal Exstrophy and doctors had prepared me for the worse. Marissa was supposed to be as they say "still born"and weigh "3lbs 3oz". As they rolled her away from me to stabilize her she let out a cry that echoed through the hallway. Waiting to see her doctors told me and her father that it was ten times worse than what they thought. When we got up to see her she turned her head and looked at me with these big brown eyes. Leaving her at the hospital was the hardest thing I had to do. I can remember her Dr. telling me "enjoy the time you have with her because these children usually don't live past one". On her 1st birthday it was an emotional one for my family and I and has been for every one after. The little girl that doctors said would not walk, run, skip, jump, play or live has by the grace of God. Marissa not only walked but she enjoys tap and ballet, baseball, gymnastics and not to mention her love for basketball. This all changed around her birthday January 2006. She was in so much pain that she could not even get out of bed. What we both went through and saw those months I would not wish on any mother. She had surgery August of 2006 to remove two stones from her bladder. After recovery I thought all would be well and we would live our lives as we did before. I knew since birth that Marissa's case was going to be a life long journey that would consist of more surgeries. But I didn't think this soon. I took Marissa into the hospital for pain as well as high fever. thinking it was just another UTI. I was told by doctors that not only did she have a UTI but developed a severe kidney infection. She had temperatures reading at 105.1!! Any mother out there as I was would be going crazy thinking what is going on with my child. Nurses exchanged thermometers and paged doctors. Doctors rushed in the room only to see this little girl playing video games and asking for more Gatorade saying "I feel fine". I had a doctor visit. She was there to tell me they had found in an MRI that Marissa has whats called a Tethered Cord and Chiari Malformation. From what I've read it's where your spinal cord somehow attaches to the skin on your back and as you grow it stretches downward causing your brain to sag. Now at this point I can't believe what I'm hearing. They start to examine her and find that its so severe at this stage that she has already lost reflex in her legs. Doctors are saying she needs Spinal cord surgery and brain surgery. They say that there is a chance that "she may not walk again". As here mother I can do one of two things break down and cry or be strong and stand by her side and fight with her. I've always taught Marissa to be strong and independent. She is my strength in all I do. I ask you to pray for Marissa and my family. God is good. I don't see this as Why me Why us type of things don't get me wrong I used to. Everyone needs to realize God is making miracles in our lives everyday. He never leaves our side. You don't go through things just because its for a reason. Reason being to bring you closer to him. He loves you!

Our purpose for sharing our story is in hopes of others gaining strength through Christ.

Erica Ledesma