Today is more than Leap Day, it’s …

Today is more than just Leap Day; it’s Rare Disease Day. 

I would not have known, except for my life-long friend Liliana, who posted about it on Facebook. Her son Ric has the rare Evans Syndrome, and she is making sure not only that he has everything he needs to live the healthiest life possible, but she is also raising awareness with more heart and generosity than anyone I know.

This is my friend’s touching and informative post:

It’s Rare Disease Day! Here comes your bit of awareness.

Evans Syndrome is a very rare autoimmune disease that affects your platelets, white blood cells and red blood cells.

When platelets are low, your blood can’t clot. Therefore, bleeding (sometimes in the brain) can happen. Patients may show bruising, petechiae and bleeding from anywhere.

When red blood cells are low, there is very little oxygen going through your body. Patients tend to feel suuuuuuuper tired.

When white blood cells are low, their immune systems basically can’t fight infections. The common cold will take way longer to go away. Patients have to avoid big crowds, sick people.

All of these things can happen at once!

As of 2014, the statistic was that 1 person in 1 million get Evans Syndrome. Let that sink in.

I admire how Ric deals with his condition. It definitely takes a special kind of person to rise above a rare disease. To not let it define him.

I remember when Liliana got pregnant with Ric. (That’s them in that sweet photo!) She was one of my first close friends to have kids. I remember thinking “she’s going to be such a great mom.” I never imagined that she wouldn’t just be a great mom; she would turn out to be a super mom, who is not only her oldest son’s champion, she is an inspiration to everyone around her. I’m thankful to have her (and all her family) in my life. ❤

Since it is Rare Disease Day, I wasn’t surprised when, later this morning after seeing Liliana’s post, another friend messaged me about their two boys and asked if I wouldn’t mind sharing about their story.

Marce and Sergio’s boys, Leo and Mateo, have another rare illness called Glycogen Storage Disease (GSD, also known as glycogenosis and dextrinosis). I don’t know much about it and I assume you probably don’t either (hence, Rare Disease Day), but I do know that these two little guys, and the handsome Ric in the photo above, could use our prayers and support.

My friend Marce, as my friend Liliana often does, shares as much as possible to remind people that for many of these rare diseases there is no cure.

I join them today in praying for health and healing; praying for a cure; praying for miracles to abound for each one of these precious ones that are so loved!

 

I’ll let my friend Marce share in her own words, “es español,” and I’ll translate below.

“Te pido oracion por ellos, y por todos los ninos diagnosticados con alguna enfermedad rara, para las cuales aun no hay cura. Gracias.”

“I ask for prayer for them, and for all children who are diagnosed with a rare disease, for which there is no cure. Thank you.”

 

Thanks for reading. Thanks for praying. And thanks for raising awareness on Rare Disease Day.

Better days are coming!

“20 Now all glory to God, who is able, through his mighty power at work within us, to accomplish infinitely more than we might ask or think. 21Glory to him in the church and in Christ Jesus through all generations forever and ever! Amen.”

Ephesians 3:20-21

Love you!

~Coppe

Dancing with the Scars

What I saw on TV last night was one of the most amazing things I have ever seen.

In general, we avoid dealing with any imperfection, delay or disability. It’s uncomfortable. We ignore, look away, or smile out of pity.

But every now & then, a person with disabilities shows up and changes everything. Gold medal snowboarder Amy Purdy, and her professional dance partner Derek Hough did that last night on ABC’s Dancing with the Stars.

I’d seen the show before, but hadn’t watched it in a long time. Since I wasn’t feeling well, I was zonked out on the couch & just left the TV on, half paying attention.

I am so glad I did!

I have experienced this a few times in my life. People with disabilities have impacted my life in many ways. But Amy and Derek took it to a new level.

I have seen my Dad, Emilio, gradually lose his sight. He lost the ability to drive a car when I was younger. He struggled with maintaining jobs and battled disappointment and loss. But he danced with me at my prom (its a puertorrican thing…families go to the prom!) He gave me away at my wedding. He relocated from Puerto Rico to Dallas, TX in his 60s and is actively pursuing job opportunities. He’s involved in church. And he continues to hone his conservatory classical music training on his grand piano. Plus, I’ve seen my Mom stay by his side through it all. Amazing.

In 4th grade, I met my friend Cristina. She had a glass eye and could barely see with ger “good eye”. But Crissy’s parents saw her & treated her as a normal girl. She rode her bike. We went to the movies & always sat in the front! We had a BLAST on church retreats to the beach in Vieques, went bowling, you get the idea. She’s now a married teacher with two boys in Austin, TX.

From a young age, I saw disability as something that didn’t have to hold you back from doing whatever you wanted.

A few years ago, my husband and I relocated from Puerto Rico to California. While working at a radio event at a mall in Temecula, I had the amazing, life altering experience of watching Nick Vujicic live. 

He was born without limbs. Talk about having special needs and challenges. He shared about his unbelievably difficult life. How do you do anything if you don’t have arms and legs?

Just ask Nick! He travels the world. He uses a special weelchair, and then gets out of it and goes on stage in front of millions of people to inspire them. He is an impossibility. But God says nothing is impossible for Him! Nick shares how, if God has helped him, no matter what we may go through, God can help us, too.

This all brings me to what I saw on TV last night.

I had not heard of Amy Purdy until last night. She had bacterial meningitis as a teen. She lost both of her legs and ended up with a kidney transplant. Her dad was the donor.

Then, she won three World Cup gold medals in adaptive snowboarding. Amazing!! 

So, she can snowboard, but could she dance? 

For this week’s choreography, she got special prosthetic legs that keep the feet pointed, so she could dance.

And she danced … and her partner Derek, sweetly, gently, led her in the most beautiful, awe-inspiring, tear-jerking dance I have ever seen.

The song was “Human” by Christina Perri. And Derek and Amy showed us that you can transcend the limits we sometimes put on what a “human” can do.