Hi, I'm Jess a mama to a very special boy. Jacob steals the heart of every person he meets every family member, every doctor, every nurse, and every therapist. He shines so bright and makes our world a better place. Jacob was diagnosed with an extremely rare genetic mutation, USP9X. USP9X-related syndrome happens when there are changes to the USP9X gene which plays a key role in the early growth of the brain. The USP9X gene is important in the development and function of brain cells so, people who have USP9X have intellectual disabilities, hypotonia (low muscle tone), language impairment and sometimes more. Jacob has been in therapy (OT, PT, ST) since he was 5 months old and he has progressed so much. Jacob will be turning two soon and the few years that we have left of his early life are vital to his progress in one day walking. We will be spending these years getting Jacob into intensive therapy sessions specifically DMI intensives(1-3 weeks). The progress that this therapy shows is amazing and exactly what we think Jacob needs. For Jacob to receive DMI therapy we would have to travel out of our city or state and do private pay. Private pay is our only option because not all insurances accept DMI therapy. Jacob has his first intensive scheduled for May and his second in August. We hope to get him into at least three more before he turns 3.

We ask kindly from the bottom of our hearts for any donations to help us get our sweet boy to reach his goal. We appreciate anyone who advocates for our Jacob, your kindness and love does not go unnoticed, and you will always have a special place in our hearts.

Love always,

De Luna Family.