Today is more than just Leap Day, it’s …

Posted on Posted in Christian, Faith, Family, friends, God, Hope, Inspiration, life, prayer, Special Needs

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

Liliana Pickens's photo.

Liliana Pickens's photo.

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. <3

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.”

Marce's boys

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