Rare Disease Day   ❤️ 

By: Owen

Rare Disease Day   ❤️ 

I wanted to write something for Rare Disease Day.  ❤️

Hi Everyone!  I haven’t been writing much recently.  When Owen started as a PEARLS ambassador, he was just 4 years old, now he’s 10!  I have been doing all the writing this whole time and I have a lot to say, but I think most of you would rather start hearing more from Owen.  I’ve been hesitant because I don’t know exactly what that would look like.  Owen isn’t a huge fan of writing and talking about his feelings.  What he does love to do is make videos.  I’d like to start sharing some of Owen’s videos with you soon.

Today, as Owen’s mom, I want to talk about Rare Disease Day.  Rarediseaseday.org explains the day like this, ” Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.”

You can read more here…  https://www.rarediseaseday.org/article/what-is-rare-disease-day

As Owen gets older, I don’t think as much about his rare disease.  It’s not the most the important thing about him, not even top 5.  However, this past year, has been a big reminder to me that Owen isn’t like everyone else.  He is vulnerable.  Owen ends up in the hospital every single time he gets the flu.  Every time.  I don’t want to imagine what Covid would do.  It’s scary and every single day I’ve had to think about Owen’s condition when I make decisions about how we’ll live our lives.

I picked Owen up from school on March 13th, 2020 and I had no idea it would be the last time he’d be attending school in person for more than a year.  He’s been home with me ever since, and we’re both doing our best to work together so he can keep learning and keep up with his classmates.  It’s been a hard year.  (You all!  Fourth Grade Math is hard!)  Owen still cries because he misses his friends.  When he attends a Zoom meeting and can see his classmates all in school without him, it breaks my mommy heart.  I hope the vaccine will be approved for kids so he can start back up in the fall with his class.

I’m sitting here today, feeling a little bit tired and my arm is sore.  I’m lucky.  I was able to get my second dose of the vaccine yesterday.  Being the caregiver of someone who is vulnerable pushed me into the first group eligible to receive the vaccine in my state.  But the truth is, it won’t change the way we’ve been living this past 11 months.  I’ll still wear a mask when I go out, I’ll still choose curbside shopping or delivery.  My family will avoid any unnecessary trips or doctor appointments.  This year reminded me that Owen will always have a Rare Disease and my number one job is to protect him.

So, what can you do to help?  If you want to do something to show you care for kids like Owen, you can do all the easy things we’ve been learning about to help protect the people we love.  Wear your mask, wash your hands, stay home if you don’t need to go out, and stay home if you’re feeling sick.

Thanks for caring about Owen and being awesome.

Photo of Owen the last time he got to hang out with his cousins!  We miss them so much.

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