Atlantic Monthly - The Girl Who Turned to Bone

The Girl Who Turned to Bone

Unexpected discoveries in the quest to cure an extraordinary skeletal condition show how medically relevant rare diseases can be.
By Carl Zimmer

Below is the article Carl Zimmer wrote that was published by The Atlantic.

On Monday, June 10th Jeannie Peeper the President and Founder of the IFOPA and Carl Zimmer were interviewed by Neal Conan on National Public Radio (NPR) Talk of the Nation to discuss The Promise In Unraveling The Mysteries Of Rare Diseases. To listen to the podcast of this interview or read the transcript please click on this link http://www.npr.org/2013/06/10/190398619/the-promise-in-unraveling-the-mysteries-of-rare-diseases
Today, June 13th 2013, the IFOPA board, members and staff are please to know changes are being made to help children and adults around the world who have a rare disease. Together we will find a cure to FOP!

This article is available online at:

http://www.theatlantic.com/magazine/archive/2013/06/the-mystery-of-the-second-skeleton/309305/

If you would like to make a donation to the IFOPA to fund research to find a cure for FOP while supporting individuals and thier families through education, public awareness and advocacy please click on Donate Now.

SOMETIMES JUST THREE LITTLE WORDS MAKE A DIFFERENCE

Life can be challenging for all of us.

Any mom can tell you that.

At the end of each the day, I feel differently depending on how the day goes.

Sometimes I just fall into bed brain dead and exhausted...because I didn't sleep the night before thinking of everything I had to do today.

Sometimes I fall into bed making resolutions... I will make my life more balanced, I will do more for my children, I will be more productive at work.

Sometimes I fall into bed wondering...did I do enough today for my children. Are they going to grow up to be good people?

Sometimes I fall into bed frustrated...because I've stayed up late working on my son's project that is due the next day.

Sometimes I fall into bed feeling like a bad mother... because I've yelled at my child for not getting it all together and being organized and getting all of their school work done on time and then they cried.

Sometimes I fall into bed hoping that tomorrow will be a better day, that I'll have more patience, that I'll be a better mom.

Yesterday, the day after I had yelled at Hayden for not being organized with homework....after wondering if I was being a good mom, after resolving to do more for my children, Hayden came over to me and laid his head in my lap and said three little words that rocked my world.

"I adore you."

Nothing could have made me fell more complete. The flood of emotions over how much I love this kid who faces so many challenges every day was so intense.

Spreading Awareness

A fellow FOP'er was just listening to a Podcast and they talked about FOP. It was the Podcast "How Broken Bones Work" by Stuff You Should Know. About 31 minutes in, they talk about FOP. It was pretty good. It is great to hear people talking about it and spreading awareness.

You can check it out here: http://www.stuffyoushouldknow.com/podcasts/broken-bones-work/

I am...

I am

I am a woman

I am a daughter, a sister, a wife

Most of all I am a mother

I am a mother who daily tries to figure out how to do it right

How to do it equal

How to instill values in my children

That make sense to them

That encourages them to give back

That teaches them to help it feel better, even when its not

I have a secret to share

It's hard

It's hard to have a child with special needs

I cry a lot

I smile a lot

I say I'm doing fine when I'm not

The littlest things make me sad

The littlest things make me happy

I want to change the world

Change the life of my Hayden

Give him the things he wants so badly but I can not give

I want him to be able to stand tall

Walk on his own

Breath deeply and fill his lungs with air

Raise his hands over his head

Get himself dressed

Tie his own shoes

Dance with a girl

But most of all

I want to grant him his wish

Of being able to do things on his own

By himself

With his friends

Just to hang out with out an adult watching closely

I want him to be free

That is my greatest wish

My love for him is so fierce, it hurts sometimes

My Elsa is strong

She has been through more than any 9 year old should

She is my light, my joy

She exudes happy, mischievous energy

She makes me laugh

And reminds me to be a girl

That life is normal

She is my confidant and legacy

I am beyond proud that she is my daughter

Hayden and Elsa are me

And I love them 

One Year Later

Isn't strange when some one says you can't have it, you want it more. Or you can't do it and your determination gets in the way and makes it happen. That's how I feel about Hayden almost every day.

Today it has been one year since he came home from UCSF PICU. Thank you to all of you amazing doctors, nurses and respiratory therapists (and you know you are) who made bringing Hayden home a reality. 

He finished 6th grade, he's made new friends and kept up with the old, he's had easy days and hard days, but in the end he is happy and that is what matters most.

Special thank you to Dr. Kitterman who was there for us every morning at 7am rounds for 4 months straight. You are an angel!  And to Nurse Adrienne who was with him from the beginning and pushed the limits so Hayden could understand why he should live.

To all of Hayden's amazing nurses and respiratory therapists,  we miss you all and are a huge reason Hayden is here today.

To Hayden's doctor's, thank you for telling us the truth and not holding back. I know that is what gave John and I our determination to see him walk out of the hospital.

Thank you to our families and friends who still give so much to us and Hayden in terms of love and support.

xo
Megan

Hayden and John at Stinson Beach for 4th of July.
Hayden's first sleep over away from home since being
in the hospital.

12 years ago today....

Twelve years ago today at 7:30am,
Hayden came into my life.  

It was quite possibly the best day ever.
  

He was so perfect, except for those funny looking toes :)

His little smirk makes my heart glow...

Art at Old Mill School - Kindergarten

Last year at this time, I wasn't sure if he would make it
out of the hospital.  The doctors said there wasn't
anything else they could do for him.

Hayden in the Pediatric ICU with companion dog Nalani.

And you all know what happened,
Hayden showed them he could fight.

So we had his11th birthday party in the hospital.

Birthday gathering in the UCSF Pediatric wing

He graduated from 5th grade....virtually.

Me accepting Hayden's diploma.
Hayden was participating via Facetime. 

And then on July 11th, he walked out of the hospital and

we went home. Oh my god I almost cry thinking about it!

Day before leaving hospital

This last year has been so amazing. 

I am so very proud of everything Hayden has accomplished.

Going to 6th grade.

Going to school dances.

Making new friends.

Keeping up with the old ones.

But most of all I am proud of the things that may seem little.

I am proud that he gets himself out of bed every morning...

even when its hard to breath.

Sleepy Hayden

I am proud that he will go to school with a stomach ache

and a head ache just because they are 

dissecting worms that day.

I am  proud that he is willing to take chances and

trust doctors and nurses even when he is scared.

I am proud that he gets out of the house to see friends at

the movies, go to baseball or soccer games because

its a big deal to pack up his equipment and get him outside...

and sometimes it scares him.

Hayden & MTS Soccer Team

Bottom line I am so proud of all that he has done

 since leaving the hospital. 

@ Tamalpie...new favorite restaurant

He is such an amazing kid and an inspiration to me.

Bailey & Hayden

Happy 12th Birthday Hayden!

Love, Mom

Alison & Ado's 1st Blogoversary - Blog Bash

My friend Ado started a blog while Hayden was in the hospital last year.  Her blog got me through some rough times with a lot of laughs.  This week she is celebrating the 1 year anniversary of her blog TheMomalog.  To celebrate, all friends who blog are invite to post a favorite post from their blog.

My favorite post is "Top Ten Reasons You Know You've been in the Hospital Too Long".  It entertained me to write this and it still entertains me to read it.  I was exhausted and an emotional roller coaster after being in the UCSF pediatric ICU for 6 weeks practically night and day.  But I figured out, through writing this blog, that if I could just make myself laugh through this ordeal...somehow find some humor in it all, we would all survive.  And we did :)  Hayden finally came home on July 11th, 2011.

As a post script, I would say that UCSF Children's Hospital is the most amazing place.  Their staff is the reason that Hayden is alive today.


Top Ten Reasons You Know You've Been in the Hospital Too Long:
10.) you are on a first name basis with all doctors and nurses in your unit....as well as the janitors and admin staff

9.) you feel totally comfortable silencing alarms on the various machines your child is hooked up too....he looks fine and is sleeping.

Hayden sleeping with his Giant's jersey.

8.) you no longer hear the alarms on the machines your child is hooked up too because you've finally gotten 10 minutes of peace and are fully engrossed in a book that you haven't had a chance to read in a week.

Display from one of the machines Hayden was hooked up to.

7.) you feel completely comfortable barking at the resident during rounds (i.e. in front of 15 other doctors) because he does not communicate well.

6.) you feel completely comfortable complaining to the cheif of the department of said resident about his horrible communication skills

5.) you recieve apology from said resident and preach to him like his is a kindergartener about how good communication is the key to success in any profession. (Julie Althoff - Hayden's kindergarten teacher- would not approve of his commmunication skills either.)

4.) you start telling the nurses and doctors what to do and feel completely comfortable and commanding in your medical knowledge even though your degree is in Political Economies of Industrial Societies (but your sell textiles to the healthcare industry! )

Hayden taking his first step walking after 3 months in bed on a ventilator.

3.) you forget what you say to who and when you said it

2.) you forget what day it is

and the top reason your know you've been in the hospital for too long is....

1.) you have run out of space on the walls to decorate and start decorating the ceiling!!! Hayden's Room Remodel Complete!

Hayden's friends brought posters, pictures,
and balloons to decorate his room.
Hardly a speck of bare wall was showing at one point.