Jeff was born in Albuquerque, NM with Tetralogy of Fallot, low calcium and he had the typical facial features of 22q11 syndrome. At two months of age, a geneticist suspected Jeff had DiGeorge but we were told there was no blood test at the time to confirm this.

Jeff was late with developmental milestones in crawling and walking and wasn’t talking at age two so he started speech therapy. Just after his second birthday he had heart surgery and interestingly enough the surgeons noticed that Jeff had no thymus. Jeff catches a lot of colds and respiratory illnesses but has never been a really sick boy. At age five Jeff had soft palate surgery which was very successful and his articulation improved immensely. We also had the 22q11 blood test done to confirm that Jeff indeed did have the deletion.

In first grade we moved out of state due to my husband’s job and Jeff developed severe anxiety issues. In second grade, learning difficulties became more apparent but testing for special education was put on the back burner while we dealt with panic attacks due to the anxieties. At the end of third grade Jeff tested for and was placed in special education for math and reading. He’s such a willing learner with no behavioral problems and all his teachers have enjoyed having him in their classes.

Social skills have always been difficult for Jeff and as he gets older this becomes harder for him. Jeff has struggled with leg pain for years but putting orthotics in his shoes has helped.

At the end of fourth grade we moved back to Albuquerque and Jeff settled in quite well. This past school year (fifth grade) was a struggle for everyone mostly in part to teachers not making an effort to implement Jeff’s IEP and modifications which allow him to learn more easily. To date, we have six month cardiology checkups, we battle the anxieties and we get extra help for language/learning difficulties, sensory integration issues and social skills. Middle school starts soon and it will be a challenge but Jeff says he’s ready for it! He’s very excited.

Jeff enjoys going to baseball games, plays some basketball, loves to golf and likes to play sports video games. Hanging out with his 13 year old sister and neighborhood friends is fun too!

We have all learned so much through Jeff’s experiences; things that have enriched our lives – the special education system, being an advocate, perseverance, medical knowledge, extra joy and happiness, grieving at times, reaching out to new friends who are experiencing a similar situation and the list goes on and on. We have great hopes and dreams for Jeff and he does too. As his future unfolds we look forward to it with great anticipation and admittedly with a little trepidation of what’s around the corner.