The Lee Family
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How old was Emma Kate when she was diagnosed? - Emma Kate was one month shy of her 2nd birthday. We had a follow up with an ENT following her open heart surgery in 2012 due to a narrowing of the airway. When he saw her, he started putting everything together (heart defects, developmental delays, cupped ears, non verbal, airway issues, reflux). He turned to his pad, wrote the words "22q11.2 Deletion Syndrome" on a yellow post-it, handed it to me and told me to research it because he was referring us to genetics. He was right.
How has 22q changed your life for the better? - Having a daughter with 22q has definitely made me a more compassionate and empathetic person. I feel like it has helped me find my purpose in life and that is being a voice for my child and others like her. I definitely feel like I take less stuff for granted. I have been able to appreciate the milestones she has hit more than I think I would have had she been a "typical" child just because she has had to work so hard to acheive some of them.
What is Emma Kate's greatest challenge with this diagnosis? - Her greatest challenge is also her greatest accomplishment. Emma Kate was diagnosed with Apraxia not long after her 5th birthday. Apraxia is a motor speech disorder where children have trouble saying sounds, syllables and words. This is not due to muscle weakness or paralysis. The body has trouble planning the motor movements needed for speech. Emma Kate has worked SO hard in speech therapy for 5 years, but this past year her speech has truly blossomed! I still have to translate to other people for her sometimes but not quite as often as I once did. It's hard to see your child struggle with something that is supposed to come naturally, but she is conquering this diagnosis one session at a time.
What one thing do you need most from the 22q community and/or our foundation? - I love the educational materials! It is so great to have a handout that I can send to school with my daughter that breaks down the syndrome and how it affects her educationally. It has definitely helped Emma Kate's teacher be prepared for what she may encounter in the classroom.
What is something that you enjoy about being part of the 22q community? - I love that these people have become my extended family. They are my shoulder to cry on and my team to celebrate the victories with. Even though no two children are affected the same, it is nice to have a group to turn to where at least one person has most likely experienced what your child is going through.
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