Alex

Age: 6
Duplication: (4) (p16.1q35)
Lives in: Virginia, USA

 
Alexander August was born on June 19, 2008. He is our second son and we were beyond excited when we learned that our older son, Charlie, would have a little brother! As we’ve learned, life doesn’t always go as we have planned and little did we know, God had a very tough but beautifully life changing journey ahead of us.

Alex’s health issues were apparent from the moment he was born. After the room became quiet and I could hear whispers from my doctors, Alex was handed to me. I had heard his sweet cry and knew then that life had not been complete until that moment. I also knew when Alex looked into my eyes that life had changed in ways I didn’t understand. Moms have a deep knowing in our hearts when it comes to our children, I knew that something was different. I have found such comfort and encouragement remembering the moment I first looked at Alex, he was so calm and yet so aware. He looked into my eyes and I knew then that he was a fighter and that he was going to be ok. I love the saying, “some of the best gifts are the ones we never knew we wanted.” No parent wishes that their child will be born with special needs but I cannot imagine that our lives would be as rich without the gifts Alex has brought to us. 

 Alex has a duplication on his 4th chromosome (4) (p16.1q35). This exact duplication has never been seen before so we deal with issues as they arise. Due to the 4p duplication, Alex has cognitive and physical delays, is non-verbal, has vision issues, was fed through a feeding tube for the first four years of his life and has scoliosis, pan hypopituitarism, eczema and psoriasis. Through further genetic testing, we also learned that Alex has Charcot Marie Tooth disease. He will always be on daily medications and receives injections every night. We’ve been told by countless doctors to not expect much development, to just accept his limitations. Those are from the doctors who didn’t know Alex well, they had no idea of his spirit and intense desire to experience this amazing life! 

Alex is now in first grade. He is in a small class with five students and three teachers, as well as multiple therapists who see Alex weekly. Thanks to his amazing teachers and therapists, Alex is already learning to read sight words, is signing in three word sentences, uses an iPad to communicate, is learning math and science and loves to do puzzles and matching games. Alex is walking, jumping, climbing and exploring anything he can get his hands on! He loves school buses, time with his friends and family, reading books, jumping on trampolines and swimming. Alex loves to laugh, hug and play with Charlie. He loves visiting our family and going to amusement parks. He loves taking walks in our neighborhood and bicycle rides on the weekends. Alex was part of a running team where he competed and won medals in multiple 5ks, a 10k and a half-marathon. 

  
Alex’s diagnosis gives us the information we need to help him stay healthy and to find the best ways to help him achieve every goal that is important to him. His chromosomes do not define him or limit him. They do not tell you how huge his smile is, how big his hugs are, how much laughter he brings to our house or the love that he gives each person in his life. We want people to look at Alex and see his value, how his contribution to our family and this world are as important and lasting as anyone else. We believe with all of our hearts that God handed us Alexander with a smile on His face. He created him perfectly in His image and that is a gift we thank Him for each and every day.