This is our smiley, Riley! She is now 7 ½ years old. We just recently discovered through blood work, exome sequencing that Riley has the de novo variant, NAA10. When Riley was about 2 years old, she was delayed with speech, fine motor and gross motor skills. She started receiving speech, OT and PT services right before turning 2 years old.
Currently, Riley is in first grade at our local public school. She has a one-to-one support to assist her with all fine motor tasks, attention and focus, as well as academic needs. Some of Riley’s strengths are her very easy going personality. She is always happy and loves to give hugs. She shares everything she has and finds joy everywhere. She knows how to cheer people up and is really intuitive with other people’s feelings. Riley loves to go shopping and she absolutely loves people. She has a great memory of people’s names or places we have been.
Riley also has some physical challenges such as she is unable to write letters. She can’t physically get herself dressed, put her shoes or jacket on. Most motor planning activities are very challenging for her. At times, Riley has communication difficulties as well. Other children do not understand what she is saying or what she is trying to express. Riley is limited with her verbal expressive language. We do believe that Riley is resilient due to some of her challenges.
MAUREEN AND RILEY
written: January 2020
The NAA10 Facebook Group is an amazing resource. Families share success stories, questions or advice. It has helped us as parents connect to a community that really understands the blessings and challenges we face on a daily basis.
Some of the most worrisome concerns as parents, is Riley’s future. We continue to tackle each doctor appointment and medication that Riley needs.Included are some pictures of Riley and her younger brother, Sean. Sean is about to turn 5 years old. Since the recent diagnosis of the NAA10 it has given us clarity about Riley. We are so grateful for the community of people who support us.