February 2024 – Rare Mom Life

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:

February 28, 2015

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.

Rare Disease Week Conference – February 26, 2019

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.

February 14th means a lot to me.

4 years ago today, we were blessed to graduate from Team Training with Velocity, Cooper’s Service dog from Canine Companions.

Service Dog Velocity and Cooper on their match day, Feb 2020

10 years ago today, VIMIZIM was approved by the FDA for the treatment of MPS IVA. Cooper was diagnosed with MPS IVA in January of 2014, so we’ve been strapped into this rare disease roller coaster for a decade now.

Velocity is the first household member to wake every morning. This morning she waited until she heard my alarm to greet me at my bedroom door. I was so excited to rub that wiggly, tail-wagging butt this morning. It’s the anniversary of our “gotcha day”, and every day I am more thankful for her sweet soul, what she’s done (and continues to do) for Cooper and the joy she brings to the whole family.

Remembering our first plane ride home with Velocity, I started thinking about all the other plane rides she’s had – to all the surgeries, as well as a couple vacations and hockey tournaments. I remember being so concerned for her first few plane rides – did she need to pee? Is she comfortable? Is she disturbing anyone? Now she’s the least of my worries and by far the easiest member of our family to travel with.

Velocity’s first plane ride with us, Feb 2020

Thinking about all that Velocity has seen Cooper go through – four surgeries, hundreds of infusions, dozens of appointments. Makes me wonder what else she’ll see – what else we’ll see – what else Cooper will endure. We don’t know. We have ideas, but we don’t know. That’s the nature of this roller coaster.

Cooper and Velocity after Cooper’s surgery, July 2022

I’d like to say I’m a pro at this roller coaster by now. But I’m not. My stomach rolls when there is talk of possible medical interventions. I cry watching friends navigate their rare disease journies. I’ve learned that sharing our journey is therapeutic for me and connects us in ways I didn’t know we needed.

Today I am grateful for where we’re at. It’s been hard. I pray we can continue this roller coaster with the smiles, prayer and good fortune we’ve had thus far.

Month: February 2024

Rare Disease Day 2024

All the feels for Valentine’s Day