Hello, my name is Jennifer, and my son is Preston. We live in Dallas, TX. Preston is ten years old, and we thank God for his life every day. Preston has changed every part of who I am to my core, and he taught us what pure, innocent joy looks like and how to savor it. I learned the true preciousness of life from the moment of his and his twin brother’s birth. I have learned that many of the things that I thought mattered in this life indeed didn’t and I quickly learned about the things that matter most.
Preston was born at 30 weeks along with his twin brother Luke, so he came into this world fighting to live. As a newborn, we quickly learned he had a cranial facial disorder – trigonocephaly – and he started missing milestones that his twin brother was mastering. Preston had a significant skull revision surgery at 11 months (cranial vault remodel) that required removing the front portion of his skull and reshaping it to allow room for his brain to continue to grow. Post-surgery we discovered Preston had airway issues as well and he had been having increasingly more GI issues that were causing failure to thrive. Preston has not known a life without complex medical conditions, hospitalizations, surgeries, and procedures. He has over 20 diagnoses and has been in PT, OT and speech therapy since he was an infant. Preston has to work much harder than most to do many of the things we all take for granted on a daily basis. Due to severe vomiting and GI issues, Preston had significant oral aversions and feeding disorders. Thanks to intensive therapy he finally started to chew solid food at the age of 4 1/2. Around this time, we began to feel that his global delays were not likely due to his prematurity.
We finally learned that Preston had PTEN Hamartoma Tumor Syndrome when Preston was six years old after whole exome sequencing. We then started to put the puzzle pieces together and search for the most appropriate care to create the best plan possible for Preston’s care. This search led us to Boston Children’s in the summer of 2017. We were blown away by the team assembled for Preston in Boston. They had experience with PTEN patients and his airway team were beginning to help us better understand his airway issues and needs for CPAP. Preston was also the first patient enrolled in the PTEN clinical trial. We made frequent trips to Boston and upon conclusion discovered he was on the trial drug. We suspected soon after beginning the trial he was on the medication, as we noticed more complex communication and increased gross motor skills. Preston had a great time getting to know the trial team and enjoyed our frequent travels to Boston. We are so grateful to have been in the trial and for our team at Boston Children’s. It’s so comforting for our family to know we are now in good hands and have an experienced team looking after our sweet boy. We thank God for His provisions and His protections along this journey with Preston and we will continue to do our part to help keep Preston as healthy as possible.