My name is Jenna Maddix and I enjoy my days as a stay-at-home mom. That’s something I never thought I would say but it’s very true. My favorite part of each week day is getting my kids off to school and it’s not because I finally get “me-time” (as much as I do enjoy quiet or listening to my favorite music instead of hearing “The Wheels on the Bus Go Round and Round” again…) It’s because I see how they love school and enjoy getting on that bus every single day.

I, especially, love watching how much my son, Noah, gets excited about school. Noah, who turned three in July, still hasn’t said his first word but I do know he has a love of school. The mere mention of the word “school” and he runs for the door with an excited laugh. This warms my heart so much. Especially since, at the beginning of the year, I was so worried about how he would do having never being in such a setting before and away from me for an extended period of time every day.

See, Noah has Lowe Syndrome. A rare, genetic, condition that affects the brain, eyes and kidneys. Noah was born on July 8, 2011. He was born the same day Space Shuttle Atlantis lifted into space for it’s very last mission to the International Space Station. After this mission, the Space Shuttle Program was coming to an end. It meant something to me because I was also a Public Affairs Specialist for NASA Johnson Space Center at the time.

We live right outside Houston, TX, as a family of four. Besides me and Noah there is also my husband Jeremiah and our six year old, Isabella.

My husband and I own a video production business and I am also a writer. I am self-publishing my first children’s picture book that will be ready this Christmas called Daniella the Dinosaur Has Dinomania. This story and a story I wrote to explain Lowe Syndrome in simplified terms, called Sittin’ By The Playground Oak Tree, have both recently become finalists in a writing contest for Texas Writer’s Journal. In the near future, I hope to get Sittin’ By the Playground Oak Tree self-published with illustrations to help raise more awareness of Lowe Syndrome and the challenges my son and other boys face everyday with LS.

JennaHere at Global Genes my series will be about our experience with Lowe Syndrome, how we came to get that diagnosis for our son, and what his daily challenges are like for him and our whole family living with this rare condition. I’ll write about the good and the bad. From our feelings on researching and getting the official diagnosis of LS to the indescribable feelings of love and optimism Noah has given us despite these everyday challenges.

Keep in touch with Noah and Jenna on their twitters here and here. 

 

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