Sharing our story

Our news story from TV6 posted this morning. Alyssa did a wonderful job helping share our story and helping to share our experience.

Here is the website for the story!

https://www.uppermichiganssource.com/2021/10/07/family-marquette-is-bringing-awareness-tay-sachs-disease/?fbclid=IwAR1gcmSh5vELVLFlvGc81e5QD_haatL-Nox-_zdsja0DEIyYep9FVsOCb1U

I'm working on downloading the video to embed right in the blog but I have to get ready for work today :) so I'll work on that later this afternoon. I just wanted to make sure I said thank you. Thank you for taking the time out of your day to read my blog, hear our story, learn about tay-sachs and Greyson. It really means the world to us how many people care and have love for our son. We have survived through these past 7 months with the help of others and we honestly couldn't have done any of this without the support we've received. Every day has it's ups and downs, but knowing our son may help another family has been helpful. This blog is my outlet and has been the best way for me to process everything, but it also helps me to know that maybe this might help save a family from going through this one day. Or it might help a family to know you're not in this alone.

If you're reading our blog for the first time- I tried to put everything under the tabs up towards the top of the page. All the blogs are listed under the "Blog" section. The oldest ones are at the bottom of the page. "Look at this cute kid" are some photos of Greyson - I update that randomly so keep checking back :) and "cute kid videos" are videos we have of Grey. "Ways to help" are our links to the gofundme, Greyson's Amazon wishlist, and our venmo for Grey if you prefer to not use gofundme. The last page is new- Contact us! If you have questions about us, Greyson, tay-sachs, if you want me to talk about something in a future blog post, or just want to say hi- please feel free! No question is off limits with tay-sachs. We do not feel offended when someone asks a question. I also made an email account just for Grey if you'd prefer to email. Greyson's email is greysons.brave.story@gmail.com.

Thank you to Alyssa Jawor, TV6 News, Andrew Lacombe, Dr. Edgar, Becky Benson with NTSAD (https://www.ntsad.org/) for helping Adam and I with the interview! It truly means so much to Adam and I.

xoxo,

Kim

Here are some videos :) This was before the diagnosis.. Grey thought Mama snorting was so funny before bed.

This was also before the diagnosis- we were in physical therapy. We thought Greyson just had low muscle tone at this time so we used an old foot rest like a desk for him to play at. This little computer was one of his favorite toys! Nana and Papa got it for him and he was always "working" and sending his emails.

Last one for today :) This was before diagnosis too. This is when Greyson could still eat food. He loved drinking his water out of his sippy cup! He used to do this little water dance when we would offer the water to him.