The Nordmeyer Family

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How old was Nate when he was diagnosed with 22q? - Nate was 3 1/2 years old.  I like to say that Nate has "a little bit of everything" with nothing severe enough to warrant an early diagnosis.  It wasn't until we saw an ENT for recurrent ear infections that 22q11.2 DS was suspected, and then confirmed.

What was the biggest challenge in infancy? Now? - Nate didn't have the diagnosis as an infant, which speaks to the need for the medical community to better recognize that children like Nate (who have a lot of "small" issues) may actually be part of a larger diagnosis.  Nate is in grade school now, so our biggest concerns are managing behavior, learning challenges and motor/speech deficits to maximize his performance in school.  It is also a challenge to balance his medical and therapeutic needs with community and social activities.

How has 22q changed your family for the better? - Overall, it has made us stronger-we have to work together as a team, whether ups or downs, rely on and support each other.  It's also made us focus on and appreciate the little achievements in Nate's life, like learning to ride his bike, tying his shoes or getting a hit in his Little League baseball game.

What is your greatest challenge with this diagnosis? - The unknown.  It is daunting seeing the 200ish areas that there can be problems with as a result of 22q, but not knowing if Nate will be affected.  It's hard not to focus on the "what ifs" or worry about what may lie ahead.

What is your biggest accomplishment? - Raising awareness, even if it is one person at a time!  We have reached out to his Little League coaches, Religious Education staff, Boy Scout leaders, teachers, therapists, neighbors...  We are thankful that we live in a supportive community.  It means a lot to have those that know and love Nate not only understand him, but expect the best of him.

What one thing do you need most from the 22q community and/or our foundation? - Support.  Bringing together families to share experiences and learn from one another.  Education and resources-for parents and the medical, therapeutic and educational communities.

What is one on thing you enjoy about being part of the 22q community? - The support of this community and the bond that we all share is invaluable.  We know that we can always find someone who understands the unique needs and challenges of 22q, and that provides us with some peace of mind.

 

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