Connecting with another DYRK1A family

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Lunch at Rotolo’s Pizzeria

The thing about rare chromosome disorders is that because it is so rare it is hard to find someone who understands and relates to the challenges you went through. I’m not going to be able to make it to the DYRK1A Meet up in Charolette, NC but I was fortunate enough to meet an awesome family here in Florida. They were vacationing from Birmingham, AL and reached out to me and I’m extremely grateful because I wouldn’t have had the guts to do so myself.

I thought I would’ve been extremely shy and awkward but the get together was anything but. We connected right away and spent two hours chatting about our boys and our lives.

It was amazing to see another child in person with Jaxson’s condition–I didn’t think I would find someone so close by.

Their features are so similar, it’s crazy! Especially around the eyes and nose.

It allowed me to kind of see what our future holds–what to expect with Jaxson. Nothing is set in stone with DYRK1A, everything is so new.. but that’s the good thing about connecting. You can learn and ask many questions with families who have been through this longer than you.

It also affirmed that our DYRK1A children are different despite having the same gene mutation.

I really enjoyed their company, as did my boys JJ and Jaxson. JJ spent most of his time on his Kindle Fire but he still had fun discussing his Angry Birds and Sesame Street games with Trotter.

Trotter is so sweet and funny. I hope you got that banana bread you were asking for at the end of our lunch!

I can’t wait to meet other families with DYRK1A! Hope to meet some of them when we move up to NC in the fall or at the next DYRK1A meet up in 2019.

Thank you for reading!

July 2, 2018
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  • Reply Wendy Lynn

    Jennie, I'm so glad you're reaching out and connecting with other families like this. I cannot express how proud I am of you (and James) for your diligence and research that led to a proper diagnosis, and the amount of energy and intelligence you apply to understanding Jaxson and getting him everything he needs. You rock!!

    July 2, 2018 at 11:25 pm
  • Reply JaxsonsMomJennie

    Thank you Aunt Wendy! I was a bundle of nerves but I'm glad I met up with them. It allowed me to see what our future holds and what we need to do. Early Intervention is very crucial and I'm glad we enrolled him in Early Steps and Therapies. I know grandma doesn't log on much but I hope she's able to read about it too!

    July 3, 2018 at 1:18 pm
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