Rare Disease Day

So tonight, as I turned the calendar to February, Meghan actually whooped with excitement.

When I asked her why, she told me that she was going to “Celebrate Rare Disease Day” this month.

I smiled in spite of myself.  This kid can get excited about anything, and to imagine that 2 years ago we never even knew there was a “Rare Disease Day.”

Rare disease logo 2013

This year she intends to celebrate with her usual charm and zest.

Our kitchen table is a ribbon making center.  We are gluing denim ribbons at an alarming rate.  She created a half sheet to attach to each ribbon, describing our connection.

Rare_Disease_Day_Ribbon hand made

Then, she bravely approached her school principal to get permission to distribute 950 ribbons to the staff and students at her school.  She will ask them all to wear jeans on February 28th.  And that day, she will not feel alone.

She is getting to know some of the other rare diseases, listed here.

http://www.rarediseases.org/rare-disease-information/rare-diseases

She knows ours is pretty rare, but the list is alarming.  Almost 7,000 diseases fit the criteria for “Rare Disease.”

http://curiosity.discovery.com/question/criteria-to-determine-rare-disease

So tonight, after we left the dentist, with the encouraging news that she doesn’t think we need an oral surgeon.  We were in a pretty good mood.  Meghan and I looked in the mirror at the “cobblestone gums” (a hallmark of our Cowden’s Syndrome) that we share.  Mouth issues are just another battle to be fought in the war.

rare-disease-day-feature

Rare Disease Day gives her a focus.

The pain has been horrendous this week.  The legs, the knee, the groin, the arms.  Probably the weather – everyone says.  Little solace to my 9 year old.  The Celebrex seems to be quitting.  Supplemented each morning by a dose of tylenol, she gets through the day.

But she lights up again when the talk returns to “Rare Disease Day.”  She has hopes that maybe her young friend in Australia, or in Ohio – both with Cowden’s, might be able to Skype into her school.

She and I have matching shirts from with the Global Genes logo.

hope t shirt

She wants to give these ribbons to anyone who will take them.  She wants the world to know, and to understand.  Even if it is only for a day.

She wants her pain, her doctor’s appointments, her worry, her biopsies, her surgeries… to matter.

She knows they do.  To the people who love her.  She knows there is a virtual army following her in prayer every step of the way.  She knows they are praying for the “retinologist”  visit, and for her eyesight, as well as for her health.

She knows that some of them she knows, and some she will never meet.  She appreciates every single one.

And this is the month.  She will have “her” day.  She will include everyone.  She will not feel like 1 in 200,000.  She will not be lonely.

Rare_Disease_Day_Logo_2011-1024x968 2

She hurt tonight.  We rubbed her legs, and kissed her before bed.  We have no idea if it will ever be alright   So we don’t lie anymore.  We do what we can, when we can.

I will contact the local papers, and see if I can get someone to pick up a story on a little girl who wants to change the world.

I will eagerly await a phone call from the Global Genes Project.

You will hear a lot about this during the month.  Bear with us.  We are not passive people.  We work through doing!

Two of a kind

Two of a kind

4 thoughts on “Rare Disease Day

  1. I want a shirt and I really like the necklace. The Colon Cancer Alliance is tweeting about Mrs Oboma wearing the colon cancer star. It would be neat to see the Oboma’s wearing the jean ribbons.

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