Rare Disease Day 2024

You know what today is? Leap Day, February 29th, the rarest day of the year, recognized as Rare Disease Day.

In years past I have been on the local news, sharing Cooper’s journey with the community:

In years past, we visited the Colorado State Capitol to advocate for those with Rare Diseases:

In years past I have been in DC, speaking with congresspeople about how to better serve those with rare diseases:

In years past, I’ve attended conferences to learn how to advocate for rare diseases. Later I helped lead advocates to Capitol Hill to do the same.

In years past I have been at Cooper’s school, doing activities and handing out cookies, raising awareness for Rare Disease Day.

Today I don’t have the energy to beat that drum. I hear the drumbeat – people around me on social media, my mom handing out cookies and raising awareness at church this morning, my memories popping up in what seems to be a million meaningful photos.

I feel guilty that I haven’t done a darn thing for it this year, so I guess here it is:

I’ve been at this for 10 years now. I’m done praying for a cure. Instead I pray for mercy. I pray for empathy. I pray for compassion and understanding. I pray that I can wholeheartedly embrace the present and lift Cooper up the way God intends me as Cooper’s mom. I pray that I am a good example of how to treat others.

I imagine I have a different filter on life than most people. I want to spread that filter to better help humanity, not just Cooper and those with rare diseases.

So yea, it started with Rare Disease Day and a bunch a statistics:

• 70% of genetic rare diseases start in childhood
• 5% of the population are currently affected by rare diseases (that’s 300 MILLION people worldwide living with a rare disease)
• 1 in 10 Americans have a rare disease
• There are over 6000 identified rare diseases
• 72% of all rare diseases are genetic

Cooper is the face of those statistics. I’m making a difference NOW, with an impact bigger than our rare disease community. How about you?

Let’s start this way:

• Embrace and include those with differences
• Don’t stare, say hi instead
• Don’t look away, say hi instead
• Listen
• Refrain from being judgmental
• Smile

We are still funding Morquio research – answers and better treatments are out there and I hope that they are in time to help Cooper. But my time and energy is here with these awesome kids today.