Here is her story...

My name is Erika Rodriguez, and when I was 19 years old, I found out I was pregnant and soon after, I learned that the baby I was supposed to be having in a few months was given an unofficial diagnosis with an extremely rare condition that I had never heard of. Arthrogryposis Multiplex Congenita. Over the span of a few weeks, we went through a roller coaster of emotions while figuring out what was going on with our baby. Many ultrasounds, exams, and procedures later, we found out we were having a girl and given that her arms and legs had been in a fixed position in all her ultrasounds, there was a possibility she had this condition called Arthrogryposis. We had never heard of the term, and didn't understood why our obstetrician was pushing us to have an abortion. After countless days of research, tears, prayers, frustration, and questioning, I decided this baby was going to be brought to this earth and I will do anything and everything to give my girl a happy life filled with love. On March 14, 2014 Sofia Rain was born. Seeing that sweet face during the c-section was more than enough of a promise from God that everything was going to be okay. Since day one, however, it has been a tough road. Besides being young parents, we were now taking on a long hard journey of parenting a child with a rare condition. For those who don’t know about Arthrogryposis, it is (in basic terms) a weakness in muscles and tightness in joints. The non-genetic form she has affects 1 in 10,000 babies worldwide. In Sofia’s case, her arms and legs were affected by this condition- giving her hip dysplasia, clubbed feet, weak muscles, and contractures in her extremity joints. Doctors still do not know what causes this condition, but Sofia has remained a tough little one, determined to fight through this with me. By the time she turned 9 months old, she had been in the NICU, undergone countless hours of painful therapy, exams, and procedures, months of living with casts on her legs, one big surgery for her hip dysplasia and clubbed feet putting her in a cast from chest to toes for 9 weeks, millions of tears shed, and thousands of screams in pain.And yet, we still were able to enjoy the giggles and sassiness from our sweet Sofia. In December of 2014, we went to visit a doctor who we were hoping would work with her on her upper extremities. This doctor visit was a landmark in our journey where I realized that I was Sofia’s biggest advocate and that meant I would speak up against doctors who had a negative idea on what Sofia’s future would look like... This doctor told us the 9 month old baby he was looking at would never lead an independent life and that we should prepare ourselves for that. Little did I know, this is something we would hear 1000 times more, again and again. Despite the negativity, not only would I fight harder than ever for my daughter to live a meaningful, independent life, but Sofia has surpassed EVERY goal that we set for her since this doctor visit, pushing past her condition faster than we could ever imagine.When Sofia was three, during Thanksgiving week 2017, she found her balance and took her first steps independently without a huge device holding her, wearing only her KAFO braces to support her knees. We do not tell this girl she can't do anything because she WILL find a way to do it. This girl is tough and brave. She is strong. Most of all she is happy. She is silly. She has found so much positive in her life through all of these hardships. She has a HUGE heart and she is always ready to share it with the world.Finally, after 5 years of being told that our cause was hopeless, going through weekly therapy sessions, x-rays, surgeries, endless doctor consultations from many who said she Sofia would never walk independently, we met one doctor who had a solution for us. Dr. Feldman at The Paley Institute in Florida gave us promises and ANSWERS. This doctor has sustainable solutions that WILL lead her into independence for her future, rather than just immediate solutions that may or may not work for her as she grows. For the first time, we were told that there is no doubt Sofia would be independent.Sofia will be having double leg surgeries with Dr. Feldman on August 21 and September 10, 2019. This surgery will allow Sofia to walk without braces but will also allow her to keep the bend in her legs. This surgery will allow her to lead an independent life through all the changes her body will go through in years to come, as a woman. My worries that I have had since before she was born have been lifted just by listening to Dr. Feldman's confidence in Sofia's success. This whole process will be far from easy. Dr. Feldman is going to be rewiring the vascular system in her legs, one leg at a time in a two month period. Sofia and I will be relocating to Florida in order to stay local for the two operations along with weeks of physical and CranioSacral therapy, before and after operations. Dr. Feldman has performed over 30 of these surgeries and is not just hopeful but very confident in the success of these surgeries with Sofia, something we have not heard from any other doctor in the past.The surgery, therapies, and travel would cost us more than half a million dollars. But, with insurance, we are able to bring those costs down. We are in the process of raising $30,000 to fund surgical, therapy, and travel costs, as well as, continual CranioSacral Therapy for continued reinforcement during her healing journey. 15% of all donations will also be going to The Paley Instititue and The Upledger Clinic, where you find the doctor and therapist who have changed the game for Sofia. We want to help with any further research towards AMC, impacting future amcers and the treatment they will be given worldwide!

We've raised about half of those funds already, and I'm thankful that Jared has offered to run an ultra-marathon in support of Sofia's journey. Isn't that amazing?! I've certainly put my body and life on the line for my daughter. In April of 2018, I, myself, landed in the hospital and was (in all honesty) on my deathbed. After six days of being in the ICU, a lot of medication, and a month of recovery and meditation, I decided to step out of my comfort zone and do something that would truly impact Sofia’s healing journey. That decision was to fight at Brawl For a Cause, a local charity boxing tournament here in Atlanta, in order to raise the funds for her surgeries.I would take a million punches for my daughter over and over again if it meant I could take at least one obstacle away from her. So, that is exactly what I did April 6, 2019. I did not win my fight but I did not walk out of that ring losing by any means. Together, we were able to raise 25% of our goal through Brawl For A Cause and THAT is what this is all about. You all are so amazing and once again, I cannot THANK YOU ALL enough for supporting us throughout this journey! Please support us in the continuation of pushing to reach our $30K goal so that we can get Sofia walking completely independently and BRACE-FREE!

Jared Runs For Sofia

By Sofia's Journey to New Legs

Jared Runs For Sofia

Ultra Marathon for Sofia's New Legs, Donate Today!

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