We are the Hight Family - Spencer, Jodi, Chase and Lowrey. We live in the DFW area in a town called Haslet. We joined the C18 Registry around 2014 after we learned Lowrey had Chromosome 18Q-. She was almost four years old.
Spencer and I are both REALTORS® and have been working in the Real Estate industry for over 25 years. Chase is a student at Ottawa University in Kansas and is running track there on a scholarship.
As a family, we love to travel. We’ve done Disney World, Disney Land, Mexico, Germany, and France. We love the beach and the mountains.
Lowrey is our sweet 15 year old girl who lights up the room when she is in it. She is very smart and can tell you facts on many different animals and insects. She likes to learn about them and also enjoys science in school. She loves music of all kinds and has been to several concerts already including Pearl Jam and The Foo Fighters. She also loves to sing karaoke and has performed on many stages!
When she was born, she had no complications or signs that there was a problem. She did have trouble feeding, but we switched her to a bottle, and she had no issues there. There were times when her eyes would twitch, but we had that checked out by an eye doctor, and he never raised any red flags about it. She failed to meet milestones, but her pediatrician was not very proactive nor helpful with it leaving us feeling a little lost. When she was about 18 months old, she had a seizure due to low blood sugar. After months of testing, we finally found out she had 18Q-. At that time, there was little information. We, luckily, had an amazing endocrinologist who took care of her and continues to care for her today.
Searching for help and answers, we came across the registry. A family nearby connected with us and gave us so many resources and pointers on how to help her. We had all of the suggested tests run on her heart, kidneys, etc., and all were clear. We attended our first conference in 2016 which was awesome. It was so comforting to be able to meet other families like ours and become a part of the C18 family. We’ve made wonderful friends, and Lowrey enjoys hanging with them when we attend the conferences now that she is older.
Lowrey has low muscle tone, strabismus in her left eye which continues to improve with glasses, kyphosis of her spine, and recently, focal seizures. She did not grow well, so for several years, she did growth hormone therapy which helped tremendously.
In school, she does pretty well, but she has challenges with processing and working as quickly as her peers. She does not have a lot of difficulty learning, which is awesome. She needs extra time for assignments. We’ve done public school, private, and a charter school so far and made the decision to attend public school.
As the Texas coordinator, I am excited to meet and help other families navigate having someone they care for with Chromosome 18. It is my chance to give back to an organization that has helped our family so much with our daughter and connected us with so many wonderful families.
