Rare like a zebra

You know how there are special days- like national open an umbrella indoors day (which is March 13th) and No Pants Day (May 6th)? Well, I had to google those but they are "real days" people apparently celebrate. People have months for certain awareness and things.

One month of awareness I didn't know existed was Rare Disease month. Which happens to be February. They chose February because it is the month with the rarest amount of days. Rare disease day is February 28th.. which is this Monday. Rare disease day celebrates all of the rare diseases that are out there. It helps to raise awareness for the 300 million people who are living with a rare disease in the world. In order for a disease to be classified as rare- it effects fewer than 1 in 200,000 people. Tay-Sachs is a part of rare disease day. Out of those rare diseases- 72% of them are genetic. So when we talk about the importance of genetic testing... this is why. 72% are genetic, meaning it gets passed from parent to child. Rare disease day is celebrated all over the world to help families like ours feel included. To have support and educate others of what they are going through. One saying I learned from rare disease day that apparently is said in the medical field is "If you hear hoofbeats, think horses, not zebras." Meaning when someone comes in to the clinic look for common- potentially more likely diagnosis. Well, rare disease day, we celebrate the zebras. My son was the zebra and his medical team did not give up thinking he was just a horse. The found out what was going on and gave us the answer we needed (not wanted) but we were able to take action and start getting Greyson more comfortable and focusing on enjoying every minute we have left with our little man.

So on Monday, we invite you to wear some type of stripe if you can. Stripe for zebras around the world :) They also suggest wearing jeans- for genes. I think next year we will try and do more in the community for rare disease day but this year has been a little more hectic. We are finding more of our normal daily routine so I think I could spend more time with raising awareness and education on rare. Be Rare Aware! I can't wait to see what we can come up with for next year.

Here is more info-- https://www.rarediseaseday.org/

Our support group - NTSAD - has also participated in rare disease day and made graphics for all the families who shared about their rare child. Here is Greyson's.

They also have a graphic for Tay-Sachs that I wanted to share too.

Overall Greyson has been doing pretty good. He has been a little more sleepy the past few days and has been having a little tummy issues with tolerating his full calorie food. We've been doing his lower calorie food and he's been tolerating that much better. We've been having to suction more during the day but he's been doing great at night. Last night his O2 levels were above 95+ all night and he didn't need his oxygen condenser at all. We did put it on him just in case but he didn't need it. I'm hoping it might just be a little bug and he's fighting it off.

Today is also my youngest nieces birthday. She's officially 18 years old. I don't know how or when that happened but she's is 18 years old. Man. I feel old :) Happy Birthday to my sweet Ella!

We also created a TikTok account for Greyson and I changed my instagram to be more towards Greyson. I honestly use it to share about him anyway. The username for both now is greysons.brave.story . I'll try and add the link to the blog too so it will be easier to connect to. We made a linktree which is a webpage that allows you to put all the links on one page. (https://linktr.ee/Greysons.brave.story) I still don't understand how to do everything and the TikTok only had 3 videos on it. I am trying to get more up but I keep forgetting to film things we want to show.

Here are some pictures! Grey and I, Greyson's big boy room, and Adam with Grey taking a nap together :)

Here is a sweet video from when Grey was little

This one was from February 2020.

Annnnnd this one is just a funny one to share. My goofy husband :)

and this cutie patootie snuggling with Mama :)

I hope you have a wonderful week. We have a busy month this month but I'll do my best to keep posting about our lives. If there is anything you have questions on - Tay-Sachs, our equipment, the g-tube, his meds, anything.. please feel free to reach out on the contact us page. I can do more posts about things if you want to know more! I'll also work on some sharing the amazing programs we have found.

xoxo,

Kim