My Little Ambassador

Meghan is really into raising awareness of Cowden’s Syndrome and other Rare and Genetic Diseases.  She is extremely excited about “World Rare Disease Day” on February 28th.

We are in the process of making MANY denim ribbons that look like this.  She plans to ask her principal tomorrow if she can give one to every staff member and student in the school.  She wants to do this purely to raise awareness.  Her ideas for fundraisers are developing separately.

denim ribbonShe has also researched statistics on Rare Diseases, and came up with this sheet to attach to the ribbons.

February 28th is World Rare Disease Day

 

My name is Meghan… and I have a Rare Disease called Cowden’s Syndrome.  It is a genetic disease that affects only about 1 in 200,000 people.  (That is only about 1,500 in the whole USA!)  One of my genes called PTEN is broken.  It causes tumors and vascular growths in my body.  I have lots of surgeries.  My Mom has Cowden’s too.  We are luckier than a lot of other people with rare diseases.

I learned some information about other rare and genetic diseases;

1. There are about 7,000 types of rare diseases.

2. Some of the rare diseases affect less than 100 people.

3. 50% of all rare diseases affect children, and are responsible for 35% of the deaths in the first year of life.

4. 1 in 10 Americans are living with a rare disease.

5 About 350 million people in the world are affected by rare diseases.

6. If all the people with rare diseases lived in one country, it would have the 3rd biggest population in the world.

7. 80% of rare diseases are genetic.  They can present at any time in a person’s life.  My mom was much older than me when she was diagnosed.  I was diagnosed first!

8. There are no cures for any rare disease, and only 5% of them have any treatment.

9. Over 50% of all rare diseases have no foundations, support groups, or anyone looking for a cure.

10. Cowden’s Syndrome isn’t fun, but when it comes to rare diseases, we are some of the lucky ones.

We support, and get our information from www.globalgenes.org. Their slogan is “Hope it’s in our Genes.”

That “play on words” is why we wear denim, and denim ribbons today.

lori and meghan

In addition, because maybe there was a chance I couldn’t get any more proud, she received a book assignment from school.  She had to write a story where the main characters were two dogs named “Casey and Bella.”  She decided to write about what meant something to her.

Cover
Cover
Back cover
Back cover

I have no idea who will win, but you know who gets my vote.

Everywhere she goes, she seems to take an opportunity to tell someone about Cowden’s Syndrome.  She says people need to know.  She uses our necklaces to start all sorts of conversations.

Two of a kind
Two of a kind

She dreams that one day they will be as common as the “pink ribbon,” or the “puzzle piece.”

I think she is just the girl to make it happen.

Someone in one of my online groups asked if we knew anyone famous with Cowden’s Syndrome.

Does… I know someone trying to make Cowden’s Syndrome famous count?

I love my little girl!

One of a kind…

It probably started in the spring.  Meghan’s class had been working on a fundraiser for Alex’s Lemonade Stand. (alexslemonade.org)  The entire third grade was raising money for childhood cancer, and she took her fundraising work very seriously.

Meghan decided to make a bookmark, with a picture of my cousin Meghan – Angel Meghan as we speak of her – who died from Leukemia in 1991.  She wanted to make her connection to the fundraising personal.  As we prepared baskets of bookmarks to leave with people we knew, Meghan decided we should sell ribbons too.

So, I asked her what color?  She wasn’t sure what I meant, but I really didn’t know if there was a color ribbon for childhood cancer.  So, she took out her iPad and a quick search found us gold.  The gold ribbon was the color for childhood cancer.

 So we headed to Michael’s and bought up as much gold ribbon as we could find. We bought lots of safety pins.  We set to work cutting and pinning.

We dropped baskets off with my Uncle Chris and cousin Katie (“Angel Meghan’s” Dad and sister.)  They were eager to help, and passed baskets off to friends of theirs.  Before we knew it we were making more ribbons, and more bookmarks.

Meghan was so absolutely thrilled to raise over $500 for the project.  It was such a huge success and we were so proud.

That project raised her awareness of her ability to do for others, and helped her confidence so much.  It also made her aware, acutely aware, of cause ribbons.  She would identify the ones she knew, like the pink ribbon for breast cancer, and she would look up ones she didn’t know.  She learned about the puzzle piece for autism, and even yellow ribbons being used when soldiers are away from home.  I think that is the project that truly got her using a search engine too.  (Thanks Mrs. Azzarello!)

It seemed only natural, that months later, having watched me receive pink ribbons after my breast cancer surgery, and after countless surgeries and appointments of her own, that she would ask what “our” ribbon was.  Not sure of course exactly what she meant, I had her clarify.  “What is the ribbon for genetic diseases?”

So back to the search engines we went.  We tried a few other places. but eventually decided that this was the one.

It made sense.  The Global Genes Project had a logo that reflected her cause.  This was the ribbon for Rare Diseases – genetic disorders like our Cowden’s Syndrome.  It Made sense, their saying, “Hope – It’s in our genes” was catchy enough, and it left you thinking about the connection between genes, and jeans – the denim ribbon.

The next question should have had a simple answer – but it didn’t.  She said, “Can I have one?”

Once she clarified that she needed something, something to represent her, and all she has gone through, I understood.  She needed a symbol, something to wear that would make it easier to talk to people, that would help her feel proud, and strong, like it all mattered.

Sure, I thought.  We will get you something.

Well I looked, and I looked, and I looked.  There was nothing.  Beyond the sticker I had gotten as a thank you when I sent a contribution to The Global Genes Project, I could find NOTHING for her to own or wear, no jewelry or clothes with this “denim” ribbon.

Well sometimes the best ideas are born out of lunchtime conversation.  So, as I sat with some teacher friends the next day, I recanted Meghan’s desire to have her own cause ribbon.  One friend, the pure hearted Mom of an autistic son, who was wearing a beautiful diamond puzzle piece around her neck, “got it” on so many levels.  And, her husband happens to be a jeweler.

She said, “give me what you have, let’s see what we can do.”

Well I think we all thought it would be easier than it was.  But after weeks of searching her husband determined that there was nothing, anywhere like what we were looking for.  If we wanted it, we could have it, but they would have to make the mold.

Fortunate to have good and generous people in our lives, we paid only for the cost of the creation of the piece.  My friends husband generously donated his time, because he too “gets it.”  Their goal was only to make my girl happy.  And for that I am so grateful.

After anxious months of waiting, the piece arrived last Friday.  She treats it like a rare gem.

It is RARE, a one of a kind beauty – just like my girl.  But, never staying focused on herself for too long, she thought – wouldn’t it be nice if we could do a fundraiser, and sell these so that we could raise money for The Global Genes Project?

Well, last Friday we sent them an Email with several pictures.  It is a crazy time of year, but we are anxious to hear from them, and hoping that Meghan’s idea, can benefit many others.  It would be fitting.  That’s just the kind of kid she is.

For now though, the necklace is “one of a kind,” just like her!

A story of two Meghans…

 The cutie in this picture is my cousin Meghan.  She was born in 1985 when I was just in the 6th grade.  She was the first child I ever babysat for.  She was my buddy.

 She was diagnosed with Leukemia around her second birthday. 

Remissions and relapses, bone marrow transplants and chemotherapy followed the next 4 years, but a cure was not to be. 

She passed away in 1991 on my 18th birthday. She shaped my life in every way imaginable.  I am a better person because I knew her.  I developed perspective at an early age because I knew the pain of having loved, and lost someone so young.

 She is our guardian angel – ever-present in our lives. 

Disney 2009

My daughter Meghan was born in 2003.  I asked my aunt and uncle for permission to use the name.  They were pleased, but not surprised.  Meghan was a huge part of my life, and I wanted my daughter to know her name was carefully chosen, and she was named for one of the strongest little people I ever knew. 

My daughter  knows all about “Angel Meghan,” and how she watches over us.  She knows all about childhood cancer and its gold ribbons.  She happily worked to raise money for a school project this year, for a “great” cause.  She knows cancer took young Meghan’s life.

Gold ribbon
Gold ribbon (Photo credit: Wikipedia)

She also knows her Mom and her Grandma had cancer, and they are doing just fine.  She knows the battles can be won, but they seem to be all around us.

  What she doesn’t know, is where she fits in.  She lives a life where at a young age, cancer and its risks have become a real part of her life. 

She knows she fights every day, to get through her own life with a rare genetic disorder. 

 What I find interesting is she is seeking a symbol.  She wants something to wear to show the world what she is contending with. She was able to express it to me, and while I was amazed, it made sense.     

English: pink ribbon
English: pink ribbon (Photo credit: Wikipedia)

 My husband bought me a Pandora necklace with pink ribbons after the cancer diagnosis.  I have a bracelet I wear.  They give me strength, as silly as it may sound.  A sense of focus.  A reason to stay on top of things.    

She needs something.  And it isn’t easy to find.  It’s not a blue ribbon, but a denim one representing genetic disorders.  I think I will have something made.  Anything to help her find her identity. 

She is special.  She is named for someone special.  She is unique.  She is smart.  She is funny.  She is friendly, and wise.  She is a lot like my cousin who came years before her.  She is tenacious and strong-willed.  She is finding her identity.  She is growing up.  She knows Cowden’s Syndrome will never define her, but she wants to feel empowered.  I can’t  blame her.

 Two special Meghans. 

One shaped my heart as a young girl. 

 The other daily inspires me to be a better human. 

I am truly blessed.