b'Otherwise, Jaxons irregular head development would add pressure to his brain, leading to seizures, blindness, and more. Without this corrective procedure, his head would form into the shape of a football. Our goal was to have the surgery by the time Jaxon was 7 months old.From: MomBabies are resilient, and Jaxon recovered like a rockThe medical world has very limited data on CDK-13. star! I was on such a high! Dr. Bhatia, Dr. Perlyn, andDr. Bauer explained that until the case population the entire NCH staff saved our baby and gave him thegrows, and more research is done, the best course opportunity to live a full life. of action is to treat the symptoms as they arise and provide as much therapy as possible. In her words, Dr. Bhatia explained that with the number ofTherapy, therapy, therapy. Love! Love! Love!anomalies Jaxon presented, we needed to consider genetic testing. We soon met with Jaxons geneticist,And that is just what we have done! Thanks to the Dr. Bauer, who specializes in genetic craniofacialreach across South Florida, Jaxon has always been issues. After his third round of testing, Dr. Bauertreated at the Nicklaus outpatient facility in Palm conducted a DNA molecular test on the three ofBeach Gardens two to four times a week for his us. And, we finally got an answer. Jaxon has a genephysical, occupational, and speech therapy needs. mutation: CDK-13. It is so rare that there are only 324This neighborhood facility gives us access to A+ known cases worldwide to date. subspecialists without having to drive two hours south to the main campus. We are blessed for the reach that Nicklaus Childrens Hospital has and continues to develop across Florida.From the bottom of our hearts, our family is so grateful for NicklausChildrens Hospital, the Nicklaus family, Jaxons doctors, and their staff. Jaxon is not just surviving but thriving because of your supporttoday, tomorrow, and in the future! Thank you ALL for what you do. Dara Budnick'