A “Guest Blogger” for our 200th Post!

post_200

I wanted to make the 200th post of “BEATINGCOWDENS” extra special, so I asked my (almost) ten year old daughter Meghan to be the Guest Blogger!

1. How has Cowden’s Syndrome changed you? 

Cowden’s Syndrome hasn’t changed me.  It has always been a part of me.  Knowing I have Cowden’s Syndrome has only made me more aware and more prone to understanding my body.

2. What are some things you want people to know about being a kid with Cowden’s Syndrome (PTEN Mutation)?  

It’s hard not to be like other kids, but I am really glad all of the problems are found earlier than later.

3. What makes you glad you were diagnosed?

My diagnosis forced me to look at what was good for me and what wasn’t.  I had to give up soccer and dance, but I LOVE swimming, and I feel like I am getting better at it every day.  I am always trying to improve physically because I need to stay strong.  I am glad I found a way to compete with other kids, and not always be last.  I am also building swimming friendships.

Spring 2013
Spring 2013

4. What makes you sad/scared/ or worried you were diagnosed?

I feel more vulnerable, and sometimes a bit weaker because I can’t do everything the other kids can do.  I can’t run and play outside like them.  My weak immune system causes me to get more viruses, and I worry about thyroid cancer too. I try to find the positive in every negative and I don’t let worry get the best of me.

5. What is the most frustrating part of Cowden’s Syndrome?

I go to so many more appointments than any of my friends, and lots of times we have to wait forever.  I keep busy at my appointments with my books, my iPad, and my Rainbow Loom.  It is taking up the first few weeks of my summer vacation, and I would rather be home and bored than running back and forth to Manhattan every day!

6. Do you have any kids that you can talk to about your diagnosis?

I feel like I have three kids I can really talk to that understand.  My friend Conner is in Colorado.  He also has Cowden’s.  He is about my age and really funny.  Also, I can talk to my friend Georgia in Australia.  She is also about my age, and even though we are really far away from each other, she is a very nice girl.  I am glad I know her.  I have been able to FACE TIME with these far away friends.  Sometimes the time difference gets tricky, especially to Australia.  The first time I saw Georgia it was 10PM here!  We talked for over an hour!

I also have a friend on Staten Island,  who I feel like I can talk to.  Even though its only been a short time, I hope our friendship continues to grow.

7. What do you hope to do when you grow up?

When I grow up I want to be a genetecist.

I have always wanted to be a doctor!
I have always wanted to be a doctor!

I feel like I will know a lot about it.  I also want to do agility training for dogs.  Right now I have two dogs that I love very much, Allie, and Lucky.  I always want to have dogs.

Lucky and Allie
Lucky and Allie

8. How do you plan on using your diagnosis to make a difference in the world?

I plan on making all rare diseases more well known.  I want to do a movie night at my school and raise money to donate to The Global Genes Project – they help all rare diseases.

I want more people to understand rare diseases, and do more research so there can be a cure.

But, all that starts with awareness.  Last year I asked my parents for something to wear, a symbol (like a pink ribbon) that would represent me, and my struggle with Cowden’s Syndrome.  The Global Genes Project uses a denim ribbon and the saying “Hope It’s in Our Genes.”  I really like that symbol so Mom’s friend made it into a necklace for me.  It is hand engraved, and says “First of its kind.”  It is really special.

A denim cause ribbon, crafted after the Global Genes Project's slogan, "Hope it's in our Genes!"
A denim cause ribbon, crafted after the Global Genes Project’s slogan, “Hope it’s in our Genes!”

Mom and Dad have one now too.  One day I hope to look across the room and see someone else wearing one.  I want the denim ribbon to be as popular as the “pink ribbon”

********************************************************************************************************

Hi. I’m Meghan.

 I am really excited to be Guest Blogger.  Life with Cowden’s is hard.  I try to focus on all I can do, and like to do – especially swimming and reading.  I’m an (almost) 10 year old.  I wanted a normal life, but really when I think about it my life is the only one I know.   Even with its cons I’m happy with it.  Cowden’s Syndrome is a real pain,but its brought out the best in me.  People need to be aware of these diseases.  It feels great when someone understands you a tries to lend a hand.  

Thanks For Reading!

Love,

Meghan

This is it!

Yesterday was another trip to the rheumatologist.  She is lovely, but hasn’t a bit of a clue why Meghan’s pain persists – often through the Celebrex, and ALWAYS without it.

She prescribes the medicine.  She examines her.  She sees no signs of Juvenile Rheumatoid Arthritis.

We speak for a little bit about Cowden’s Syndrome, her thyroid, and some of the other battles she has endured.  I ask the doctor if this could all be related.

dontknow

And she, candidly, honestly replies, “I don’t know.  I am starting to think there is some link, but I don’t know enough about your syndrome to put it together.”

Well at least she is honest.  But it is tiresome.  The traveling.  The doctors.  The lack of answers.

confused-face

So tonight, as I gave Meghan Tylenol after swim practice because the knee pain wouldn’t cut her a break.  We turned our thoughts to tomorrrow, and the 6th Annual World Rare Disease Day.

Rare disease logo 2013

This year’s motto is “Rare Disorders without Borders.”  It got Meghan and I to thinking about how nice it would be if doctors in all the countries would share their research.  There are so many rare diseases throughout the world.  So many more dire than our own.  There are so few people even looking for cures.  As she chats and gets to know a girl in Australia with Cowden’s, we can’t help but think about how much more voice each of our disorders would have “without borders.”

http://www.rarediseaseday.org/solidarity (This link takes you to a video on Rare Disease Day)

We talked a little about the newspaper article, and how it has helped spread awareness in out community.  We talked about all the ribbons we have made and distributed, and how nice it will be to see them tomorrow, and know we are not alone.  We have raised awareness of Rare Diseases, and we have only just begun.

http://www.silive.com/northshore/index.ssf/2013/02/staten_island_9-year-old_and_h.html (This is a link to our article from the SI Advance – February 20th)

Meghan, and her determination will see her dream of the “One of a kind” necklace with the Global Genes Project Logo, find its way into their new store.  She will see more and more people recognizing that “Hope is in our Genes,” and the denim ribbon gives an identity to those who too often have none.

Meg necklace

Tomorrow people will understand what it means to “Wear That You Care,” as they don their jeans locally and globally.

Rare_Disease_Day_Logo_2011-1024x968 2

My daughter, one of the compassionate people I know, is also the least judgmental.  She is kind.  Because she knows what it means to need kindness.  She is kind because she has faith, and wisdom gifted to her.  She is kind because, “You can’t tell by looking at someone if they are sick or in pain.”

chronic illness shirt

We share a genetic mutation.  I am her mother.  She is my role model and my hero.

She makes me a better person.

Wear your jeans – February 28th, 2013.