Meghan Speaks Out!

Maybe tonight I would have to call Meghan the “Guest Blogger.”

What you read below is her speech.  She was asked to prepare something to read for her school for “Rare Disease Day” on Thursday.  She is an excellent public speaker, and fights only a few “butterflies” before she speaks.  She always makes me so proud.  I wish I could be there!

Rare_Disease_Day_Logo_2011-1024x968 2

The text of the speech was written by her.  I typed it, and then she went back in and changed it again.  I added the pictures… just for here – because I like to!

She will review the speech with her principal tomorrow, but I don’t expect many changes.

When did my baby grow up?

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Some of you, who know me, know me as Meghan Ortega.  Or, maybe you know me as Meghan from 4th grade, or Meghan from Mrs. Worsdale’s and Mrs. LaMonaca’s class.

books

You might, if you know me a little better, know me as Meghan who loves to read, and swim. You might know me as Meghan who loves dogs.

competition_pools

Maybe you know that I have 2 dogs that I love, and a mom who is a teacher and a dad who is an electrician.

 

Lucky, Meghan and Allie - My three girls

Lucky, Meghan and Allie – My three girls

But, until today, very few of you knew that I am Meghan Ortega and I suffer with a Rare Disease called Cowden’s Syndrome.

lori and meghan

Until September of 2011 I didn’t know I had this Rare Disease.  What I did know was that something was wrong and my body was far from that of a “normal” kid.

For as long as I can remember, every week of my life has included AT LEAST one doctor’s appointment, and lots of times even more.

tired-of-waiting

You’ve all been to the doctor and you know it’s not fun.  It involves waiting and waiting…and even more waiting.  It also involves poking and prodding. For me, it often means being sent to more and more and more doctors…

 

My mom says when I was a baby I wasn’t really comfortable, and I cried all the time.  I almost never slept, and wouldn’t drink my bottle.

When we talk about it now, we think my body knew I couldn’t handle dairy products, and dairy is in milk.

Mom also tells me that I started seeing lots of doctors when I was just a few weeks old.  Soon there were doctors to check almost every part of my body.

I have had 9 surgeries.  I remember having my gall bladder out before I turned 4.  I also had a lipoma (a soft tissue tumor that people with Cowden’s Syndrome get.)

I had knee surgery 4 times for an AVM in my right knee.  An AVM is a vascular malformation.  It is also common in Cowden’s Syndrome.  It feels very strange because it pulses like your heart beat. Every time I had that surgery the doctor thought I wouldn’t need another one.  But they have already done 4, and they are not sure if the AVM will ever go away, so I will probably need more.

Rare_Disease_Day_Logo_Hope_

Because I am in pain so much, I get physical therapy in and out of school.  My outside physical therapist, Dr. Jill told Mom that she should take me to see a geneticist. I didn’t really understand what that was, but we went because that is just what I do.

Dr.Pappas at NYU was really nice.  He examined me and he talked to me and mom.  When he was done he drew some blood.  He said he was pretty sure of what I had, but we had to wait for the test results.

NYU

In September of 2011, just as I was starting 3rd grade, we went back to his office and he told us that I have Cowden’s Syndrome.  It means that my PTEN gene is broken.  Your body is made up of all sorts of genes, but these are G-E-N-E-S, not J-E-A-N-S like the ones you wear.  PTEN is the gene that keeps your body from growing tumors.  Because mine is broken I get more growths, like the AVM, the lipoma, and the nodules on my thyroid that I have to have checked every 6 months.

As soon as I was diagnosed, the doctor talked to my mom and said she probably had Cowden’s too.  He took her blood and a few weeks later she tested positive.

making strides 1

Because of the Cowden’s my mom had lots of tests done, and it explained a lot of things about the 17 surgeries she has had.  On March 5th it will be a year since she had surgery for breast cancer.  She is just fine.  She says that knowing she had Cowden’s helped her find it early.  She says to everyone that my diagnosis saved her life.

School

When I am here at school I smile a lot.  I don’t like to dwell on anything bad.  We spend enough time with doctors so I try to enjoy my time with kids.

You would probably never know by looking at me, that I am in pain a lot.  I take medicine every day that helps my joints hurt less than they used to, but still most days I have pain.  It is hard for me to climb up the stairs, and play at recess, but I do it.

 

We first heard about “World Rare Disease Day” last year, but at the time we were a little too stunned to do anything about it.

Exhausted

This year I told my mom I wanted to do something to make people more aware of Cowden’s Syndrome and all rare diseases.  I was not ready yet to do a fund raiser – I just wanted to get the word out that Rare Diseases like ours exist.  There are over 7,000 of them!

I shared my idea with Mrs. Manfredi and she said I could give out the ribbons and information you received today.  I was really excited.

“Hope it’s in our genes” is the motto of the Global Genes Project.  They try to raise awareness and find cures for all rare diseases.

denim ribbons

Today I think it’s important for you to know you can’t ever really judge someone by how they look on the outside.  You never know what’s going on inside of them.

 

Be kind.

Be aware.

Rare Diseases are everywhere.

Thank you

** By Meghan – Age 9!

 

8 thoughts on “Meghan Speaks Out!

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