Alex is an amazing kid. He has a personality far bigger than anyone we know and takes everything in stride.

Our son Alex was a rough pregnancy, a premature birth, and was born with a cleft palate. For many years growing up I got hassled by those who wanted to know what was "wrong" with my child. Why was he so small for his size? Why was he a picky eater? Why didn't he walk until almost 2? Why was he not potty training? We didn't know the answers to any of this but found the help we needed and moved forward. They (healthcare providers) tried genetic testing a few times with no results, so we just continued dealing with what we could. Cerebral palsy, sensory processing disorder, delays in development, it was his struggle to deal with.

When he was 13, we had another test done where Alex's DNA was compared with his father’s and mine and we were finally given his diagnosis. We were so thrilled to have an answer after many years! They told us at that time there were only 6 other known cases and that there was little to no information about this diagnosis. We don't know what the future holds for him, we don't know what adulthood will look like, but as he is 17 years old we will know far sooner than later!

Alex is an amazing kid. He has a personality far bigger than anyone we know and takes everything in stride. He has a great sense of humor and everyone around him is drawn to him without understanding why exactly. He has touched lives since before he was born, it's been an amazing journey. He adores his two siblings which push him to keep up! He is a blessing in our lives and we just adore this guy.