Finley Robinson

We have arrived in Ohio! Tomorrow/ Wednesday will start our journey here at Nationwide childrens for Finley to receive gene therapy for SMARD.  I am sure most on this site already know what SMARD stands for, but if not it stands for spinal muscular atrophy with respiratory distress. Finley was diagnosed when she was four after our angel Emmerson went to Heaven.  We then found a group of parents on social media that was looking for researchers to help find a cure or at least stop progression to this terrible disease.  With the help of many family, friends, and even strangers around the world, the SMARD community was able to find the researchers and raise enough funds to start a human trail.   Finley will be the second kiddo treated with gene therapy for SMARD.  As we are so nervous, we are also hopeful!   We pray this is the miracle our girl deserves🙏🏻💛🦋. Thank you for all the love, support, and prayers from you all. We appreciate it more than you know🙏🏻💛🦋