Hello, I'm Maggie Shae!

Hi there!

For those of you that may not know me, allow me to introduce myself:

  I'm Maggie Shae Sheridan and I'm almost one year old!

Many of you out there may already know me, but all the people I love are launching this first-ever Grandpa's Gift Annual Golf and Camping Event.  It is taking place this May and we are all so excited about it!  It is going to be a super, duper blast!  Plus, it's been created to celebrate my Grandpa Tom's life and to raise awareness and funding for The Osteogenesis Imperfecta Foundation (OIF), something very important to me and my family...as you will find out if you keep reading!

Anyway, the reason I am formally introducing myself is because there are a whole lot of people (you may be one of them!) who are invited to this event but may not know me yet, and my Mama and Daddy said that I should always be polite girl!  So, as I said before,

Hi, I'm Maggie Shae!

I am also known as Baby Maggie, Shmageroni and Shmaggie.

But I like to call myself Maggie The Great (although I am quite partial of course!)

Here's a picture of me as a teeny, tiny little baby (about 356 days ago!).
Aw, aren't I cute?!

So, as you now know, about a year ago I was finally born into the world.  Mama and Daddy and everyone was so excited to finally meet me!  They thought that I was born just perfect (and I am of course!) but when I was about 6 weeks old I started to not feel very well at all.  Mama and Daddy started to notice that I wasn't acting very happy and I wasn't moving my arm.  They were scared so they took me to the hospital.  The doctors told them that I had a broken femur, arm and collar bone.  Everyone was very shocked and sad.  How could this be?!

That didn't seem right for such a little baby to have all that wrong, so they did a test and found out that I have a disease called Osteogenesis Imperfecta (OI), or Brittle Bone Disease.  That means that my body can't make the collagen in my bones the same way that other people's bodies do.  My bones aren't as strong and something as simple as falling down can cause me to break a bone.  OI is considered a very rare disease - less than 50,000 people in the US have it.  Many doctors have never treated a patient with OI, and they've only learned about it in school.  There are many different 'types' and levels of severity.  Some kids have it and they only ever break one bone.  But others have it and when they cough or hiccup they can break a bone.  Can you imagine what that's like for mommies and daddies and little children each day?  Even picking up your little baby can be a very scary and traumatic thing.

Sadly, OI currently has no cure.  There is treatment for kids with more sever cases, but it costs a lot of money to do research to find more treatments and a cure.  Since OI is so rare not many people even know about it.  There is funding, but not enough yet to find a cure.  Places like The Osteogenesis Imprfecta Foundation (OIF) were created to support families living with OI and to hold events to raise awareness & funding to one day find a cure.  That's what our Grandpa's Gift event is for!

Well, back to my story..
In the beginning everyone was real sad about it (you can read my old blog posts for that stuff).  It was all very confusing and we didn't know very much about my disease.  Many people, even doctors, couldn't give us any definite answers about anything.  We were scared and confused.

I was in a lot of pain and I cried a lot, and that made everyone else feel even more sad because there wasn't much they could do for me.  I had to wear a special harness for a few weeks to help my femur heal and I had to take a lot of medicine for the pain.

Here I am with my harness

But, eventually I got better.  the harness came off and I started to smile a lot more, which made everyone else smile a lot more too!  My doctors seemed very pleased each time I went to see them, and that made my Mama and Daddy (and everyone else) really happy!  Soon it had been 2 months since I had a break, then 4 months, then 9 months!

I used to go see my doctors at the Skeletal Displasia Clinic at the children's hospital in Chicago every 3 months.  But since I seem to be doing so well now they want to see me every 6 months!  I see a Geneticists and an Orthopedic Surgeon and their team of residents and lots of others.  They are all very nice to me and tickle and smile at me.

I do all of the things that every other baby does, but people just need to be more careful with me.  I don't know when I might have another break again, or even if I ever will.  Like I said, there's not much known about OI and every case is different.  So it can be a very stressful life, but my family chooses not to live like that.  They just treat me like any other kid, and I like that!  Of course, it's great to be different and unique, but my disease doesn't define who I am and I don't want people to be afraid to play with or hold me.  Everyone has something unique about them, but I want to be known for my smiles, my beautiful personality and all of my other wonderful talents, not a silly old disease!

So, now you know all about me and my story.  If you want to help spread awareness about OI, help families living with OI, and help fund research to find a cure please visit this page.

It was very nice to meet you, and of course...

Thank you so much for supporting me and others with OI!  

xoxox, 

Maggie Shae

Here I am with my Grandpa Tom!