Hattie -Dup15q Family Story

March 1, 2018


Hattie was born healthy in April of 2013 at 8 lbs. 14 oz. She was an easygoing and happy baby (nursed well, slept well, and seemed happy & curious) but she was not meeting the typical milestones of an infant. Hattie began early intervention at 10 months and made a little progress but was still very delayed. At 18 months, after genetic testing, she was diagnosed with isodicentric Dup15q. About a week before she turned three, she began having seizures which gradually progressed over the next two years. We fight a daily battle to keep them at bay and her as safe as possible. We are looking forward to our first visit to see Dr. Thibert in Boston at the end of April.

Currently, Hattie attends a preschool program for children with disabilities at our local elementary school where she receives various therapies, works on IEP goals, and learns to interact with peers. She also participates in weekly hippotherapy. We plan to begin ABA therapy, as well, as soon as our name comes up on the waitlist. Despite being nonverbal, she is very expressive and loves to cuddle. Some of her favorites include reading books, music, swimming, and dogs. I have faith that she will, one day, be verbal. I am also hopeful that our new venture into cbd oil will make a positive change in her seizure activity and she can then focus on learning and growing. Hattie was also chosen for Make a Wish and we have wished for a seizure-alert service dog. This will give me comfort that she is being “watched” while I can’t be with her. Hattie is extremely resilient and lucky kiddo. She is spoiled rotten by many friends and family – the way it should be, right? We are always looking to do what we can to make her life the best it can be and give her every opportunity for success. Joining the Dup15q Alliance has been an amazing resource and support system for her and our family. I am grateful every day for my little warrior and for the Dup community tha