200 Strong

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DYRK1A

As mentioned in my Telling Tuesday post, changes in the DYRK1A gene–located in the 21st Chromosome–have been linked to:

  • Intellectual Disabilities
  • Microcephaly
  • Speech and Language Impairment
  • Seizures
  • Autism

and more (DYRK1A, 2018)..

200 Strong

As of the beginning of July, we have reached 200 families with DYRK1A Syndrome. Our Facebook group founder, Amy C., started the group in 2014 with one other member from the U.K. and reached up to 100 families within the first couple years. NOW, we are at 200 families! Amazing. The community is filled with so much experiences, knowledge, and love despite all of us being located across the globe.

DYRK1A Chart

A VILLAGE

It really does take a village. I do not feel alone in this journey even though the only interaction I have had with these families are over the computer with the use of social media–with the exception of meeting the Cobb family. We all have a common goal, to raise awareness, to put ourselves out there and be known. Not even a language barrier can stop us. I can’t wait to go to the next Meet Up in 2019 and meet our growing family!

SPARK

I’ve decided to go back to school as well with our recent diagnosis of DYRK1A. I want to be able to work from home and take care of Jaxson when he ages out of school. I don’t want to have to worry about him in the future. I’m currently pursuing a degree in Medical Billing and Coding at Ultimate Medical Academy–boy it’s tough! Definitely tough trying to focus on my academics and juggle two kids but Jaxson and his brother JJ have put a spark into me. A huge spark to better myself and keep fighting.

I’ll be graduating with my degree in February 2019, if you know of any organizations or companies that need a Medical Billing and Coder please let me know!

References:

DYRK1A. (2018). Retrieved from http://www.dyrk1a.org/start-here

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July 15, 2018
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No comments

  • Reply Scott Gombar

    Takes courage to share your family's journey. Keep sharing. You're helping someone.

    July 21, 2018 at 7:27 pm
  • Reply JaxsonsMomJennie

    Thank you Scott!

    July 21, 2018 at 10:36 pm
  • Reply Larrisha Hester

    Thanks for sharing. Stay focused and encouraged so you can finish school.

    July 22, 2018 at 2:57 am
  • Reply Natalia

    Fair play to you to juggling busy family life and studying. You are the proof that if you put your mind into something everything is possible.

    July 22, 2018 at 10:07 am
  • Reply JaxsonsMomJennie

    Thank you Larrisha! Thank you for reading <3

    July 22, 2018 at 2:54 pm
  • Reply JaxsonsMomJennie

    Hello Natalia, thank you for reading. It's definitely hard but I'm very determined!

    July 22, 2018 at 2:54 pm
  • Reply Julie Plagens

    Good for going back this school! Good luck on your journey. Your kids are fortunate for you to stay at home.

    July 22, 2018 at 8:35 pm
  • Reply Maysz Adrias

    Wow this is very encouraging! keep that motivation and I know you can finish your school!

    July 23, 2018 at 4:05 am
  • Reply LiveLoveAndAdventure

    Thank you so much for sharing your story, and good luck with going back to school. I went back to school a few years ago to FINALLY finish my degree while managing a full time job, running my own non profit and trying to keep up with my family. It was exhausting and there were times I felt really overwhelmed, but hitting the send button my my last assignment to get my degree was the most amazing feeling ever. You will get there, hang in there!! xo

    July 23, 2018 at 4:31 am
  • Reply JaxsonsMomJennie

    Julie, thank you so much. I am so thankful everyday I'm able to stay home with them.

    July 23, 2018 at 5:38 am
  • Reply JaxsonsMomJennie

    Hello Maysz, thank you! I hope to help motivate and encourage someone else 🙂

    July 23, 2018 at 5:39 am
  • Reply JaxsonsMomJennie

    Thank you. Thank you for taking the time to read our story. I can definitely relate–I graduated with a Bachelor's in Health Care Admin and it was the greatest feeling. I can't wait to do the same for this! What type of non-profit do you do? 🙂

    July 23, 2018 at 5:40 am
  • Reply Brittany Charnley

    Congratulations on your upcoming graduation. That is an amazing accomplishment!

    July 24, 2018 at 6:02 am
  • Reply Lydia Samson

    Wow, keep the faith and keep going with the advocacy! It makes a huge difference!

    July 24, 2018 at 7:50 am
  • Reply JaxsonsMomJennie

    Thank you Brittany, I'm super excited!!

    July 24, 2018 at 10:17 pm
  • Reply JaxsonsMomJennie

    Thank you Lydia. I hope to help someone out there, even if it's just one person. 🙂

    July 24, 2018 at 10:17 pm
  • Reply Olga Zak

    Wow what an encouraging post! Keep going with the advocacy! Thank you so much for sharing your story, and good luck with going back to school.

    July 25, 2018 at 5:23 am
  • Reply Lavanda Michelle

    What an interesting post! I learned a lot. Im glad you guys are okay. Thanks for sharing! 🙂

    July 25, 2018 at 5:30 am
  • Reply JaxsonsMomJennie

    Thank you Olga!

    July 25, 2018 at 10:49 pm
  • Reply JaxsonsMomJennie

    Thank you Lavanda <3

    July 25, 2018 at 10:49 pm
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