Hayden's Hope

Thursday, September 12, 2013

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:
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.


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.

Saturday, May 18, 2013

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