The McClellan Family

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When was Maren diagnosed with 22q? - Maren was diagnosed when she was 15 months old (she is now 12).

How has 22q changed your life for the better? - So many things have happened on our journey that have enriched our family.  We've been fortunate to meet so many other families.  We've made a lot of great friends in the 22q community.  We've also learned a lot along the way.  We've become more patient and more accepting.

What was Maren't biggest challenge during infancy? - Her greatest challenge in the beginning was feeding.  She was born with a cleft palate, which made sucking difficult.  Her palate was repaired at 11 months, before we even knew she had 22q!

What is Maren't biggest challenge now? - Her greatest challenge now is her schoolwork.  She learns differently than a lot of other children, so information must be presented in a certain way for her to learn.  She's a hard worker, though, and always has a book in her hand.  She absolutely loves reading!

What is Maren's greatest accomplishment - I think her greatest accomplishment has been learning to ride horses and competing in horse shows.  She is confident and fearless around horses.  It has been an amazing experience for her.  Horses have changed her life and her outlook so much.  She has gained confidence and focus.  As a result, I've become a huge advocate for hippotherapy (the use of horseback riding for theraputic and rehabilitative treatment).  I wish all children with 22q could have the same experience.

What one thing do you need most from the 22q community and/or our foundation? - I'd like to see more positivity in our community.  The way we speak and act makes an impression on our children and those around us.  We need to embrace 22q.  Sure, it comes with challenges and health issues, and I understand there are often struggles.  But there are also so, so many gifts.  There are so many "cans".  Let those "cans" silence and "can'ts".  I'd like to see continued community support from The 22q Family Foundation.  I appreciate the way you've immersed yourselves in the 22q community and the way you've made yourselves accessible.

Anything else you'd like to share? - Advocacy is a huge passion of mine.  I feel like I found my voice when Maren was diagnosed.  I realized it was my responsibility to find out everything I could to help her.  I took a course called Partners in Policymaking.  The course is offered in 27 states and is also available online.  In order to participate, you must be raising a child with developmental disability or be a self-advocate with a developmental disability.  I left the course so empowered.  I knew how to advocate for systems change at the end of the six month period.  I was able to take what I learned in Partners in Policymaking and work with a representative in Louisiana and another 22q parent (Ashley Bourg), to pass legislation requiring knowledge of 22q among early intervention providers.  It is our hope that the legislation leads to early diagnosis and appropriate early interventions that will help individuals with 22q in the long run.  I've since moved to Arkansas and I'm planning to work for similar legislation here.  I'm also a big believer in building community around you.  I've started support groups in LA and AR.  There are people with 22q in your area.  It's so important to seek them out and build a support network.  It will enrich your journey.

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