Inspiring Life Despite A Diagnosis

Nothing could have prepared Sandra for the life she has had. One of her twin boys was diagnosed with ADNP syndrome.  They did not get a diagnosis until Tony was six years old which was difficult, but also a blessing. ADNP syndrome did not have a name and it wasn't until Sandra got involved that a name was actually chosen. A Long Road to ADNP Syndrome Diagnosis Shortly after Tony was born, he was having trouble sucking and keeping his body temperature up.  He was sent to the NICU, where medical staff expressed concern about Tony's heart. It was discovered Tony had four heart defects. At three months of age, he had his first open-heart surgery.  Before the surgery, doctors believed he had Chromosome 22 Deletion disorder, but that test came back negative. As he grew, Tony wasn't looking at his parents, showed no interest in playing, and was missing milestones.  After having an MRI, Sandra's worst fear was confirmed. "Something much bigger was wrong with Tony." Because several brain abnormalities were identified