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Determined

200 Strong

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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Determination

Jaxson must be hitting a growth spurt or maybe it’s because he’s been around his older cousins while on vacation. He has been watching them and chasing after every single one of them at our BBQ.

He’s literally doing so much and developing such an awesome personality.

Recently I wrote about Jaxson drinking out of a straw and how he’s taking a couple steps before going face first into the ground. Last night he amazed us at 12:30 AM–yes, you read correctly AM. Jaxson is a party animal at night.

He started to push up on his feet and STAND for maybe a couple seconds. He did this so many times last night and would laugh, smile, and flail his arms back and forth with excitement. It was such the cutest thing. He was SO pleased with himself.

We also celebrated Airway Disorder Day 2018 yesterday–Did anyone else join us? I painted my nails light blue for my little warrior and he was rocking his Lu the Lamb onesie from Coping with LM.

He has a one track mind and is very determined but it’ll definitely benefit him in the future. He’s one tough cookie that’s for sure!

July 12, 2018
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