EVERY MOMENT COUNTS
Hattie was born healthy in April of 2013 at 8 lbs. 14 oz. She was an easy going and happy baby (nursed well, slept well, 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 wait list.
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 an 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 that we belong to.
Michal was diagnosed with dup15 right before her second birthday.
Michal was born May 13, 2013. She was an extremely quiet and well behaved baby. We felt lucky; we could not have imagined it being anything else.
Michal started daycare full time at 3 months; it wasn’t until they noticed that Michal wasn’t meeting her milestones that we decided to do some investigating. We called in early intervention and made an appointment with a neurologist since we couldn’t get an appointment with a developmental pediatrician.
We began therapies and the neurologist said that we should wait a bit and see how she progresses. Finally after a while the neurologist saw she wasn’t progressing the way he would like and he ordered some tests. She had an MRI and blood work. The MRI was clear but we had to wait for the blood work.
It finally came back in April of 2015. We were told Michal has a duplicate chromosome 15. The neurologist explained it was extremely rare and she will never have a normal life and we should find the alliance online. We left stunned. The doctor didn’t explain anything! We went home and looked up the dup15 alliance. We are so grateful that this alliance exists. It helped shape our early days and it still does. We joined the Facebook group and started learning as much as possible and asking questions when necessary.
Michal has continued her therapies and we have fought to get her private placement. She is so amazing and sweet and we can’t imagine our lives without her. She is slowly progressing and continues to amaze us every day.
Addysen is Idic 15 and we live in White Bear Lake, Mn. She is seen at the clinic in St. Paul and is in a full time special needs program for kids with autism. She loves the muppets, her favorite is Kermit the frog. She can’t talk but is really good at finding muppet movies on her tablet. She also learned to ride an adaptive tricycle this year she loves riding it all over the school! I love Dup 15 Alliance so much useful information and a great way to connect with other families!