All posts by Jennifer

Climb for a Calling 2016

Hallie Bea visits the 9/11 Memorial Museum in NYC.

On September 11, 2016 Shane Harmon, a Fort Worth, TX Firefighter and true Hero, asked Hallie to speak to the participants at Climb for a Calling. Here is her speech.

I don’t know much about September 11th; I am ONLY 8.
But I have seen some of the pictures of that day.
And I hear what my parents say.
I know bad guys did a TERRIBLE THING.

And parents didn’t come back home.

I know that first responders were killed trying to save lives.

The fire fighters, police officers and paramedics
that we depend on to save our lives;
THEY paid with theirs that day.

I know that my daddy went to Iraq to fight for OUR freedom
because of that day.

And some of his guys didn’t come back.

I know in the pictures that I have seen there was a sadness,
but I also see in those pictures hope and humanity.
STRANGERS holding each other up.
And HEROES continuing to climb
They climbed the steps to save more.

I know people LIFTED each other UP
sometimes out of the rubble
and sometimes out of themselves.

Today we remember those we lost, the stories of survival, and those of hope.

But just as our heroes continued to climb the stairs that day,
CONTINUED to save more people,

Our first responders who survived that terrible day need us NOW MORE THAN EVER.

Many of them are sick.
SICK with different cancers.
SICK with blood disorders.
And they need a bone marrow transplant to survive.

They need US. They need YOU.
To give them a fighting chance…
To give them MORE time…

We HAVE to do MORE.

There are 14,000 people that need bone marrow transplants.
And kids like me…
Who need to find their bone marrow match.

I have been looking for a LONG time for my bone marrow match.

And I know looking out today that MY MATCH or maybe THEIR MATCH CAN BE YOU!

Look around.
You could be standing next to a HERO who can give a second chance. And, that’s what it’s all about.

My favorite activist, Martin Luther King Jr., once said
“Life’s most persistent and urgent question is: what are you doing for others?”
I ask you today… what are you doing for others ?

Please choose to do MORE.
Please give the GIFT of a second chance.
You can join the national bone marrow registry today at the DKMS table.

Thank you.

What does sick look like?

Invisible illness. It’s a concept getting more and more attention. Stories of suffering from chronic pain, renal failure, diabetes, and most publicly, mental health issues have peppered our social media feeds.

You may read of a friend, coworker or family member about to start chemo or radiation treatments for cancer and think to yourself, “Wow, I didn’t even know they were sick!” They didn’t show outward signs. They didn’t miss school or work. But, you’ve heard of cancer. And you know that certain kinds of cancer don’t “show” on the outside.

Apply that to other diseases that aren’t the big C. Rare diseases, that when someone tells you they have it, you stop and think, “Wow, I have never even heard of that!”

What does sick look like?

For a rare disease, sick might look like what you imagine. Sick might look like a person confined to bed, or a child in the hospital unable to enjoy being a child.

Or, sick might present itself to the outside world as not sick enough. Sick might show up looking completely fine during the school or work day, only to be completely decimated upon the return home; tired and weary from trying to NOT look or act sick.

Sometimes sick can look like an eight-year-old girl who is fighting for her life every day. Sick can look like not participating in all the same activities her friends do because she tires too easily. Every cold could mean missing school for weeks. Every exposure to someone with the flu could mean disaster. Sometimes, it looks like not sick at all, until you really look and see the incredibly dark circles under her eyes, the lack of bounce in her step, and the fact that she just wants to go home after school instead of trading Pokémon cards at the bus stop with her friends.

Sick can look like constant blood draws, frequent expensive trips to see doctors, and medications that make you feel less than yourself when you are way too young to understand why you are sad or angry. Sick can look like taking that medication even though it can stunt your growth, change your sleep patterns, slow wound healing, make you dizzy. But you take it to LIVE.

Sick can look like Hallie, who needs a bone marrow transplant for Diamond Blackfan Anemia, her very rare, and right now invisible, disease.

Invisible illnesses are real. And, they are heartbreaking. Hallie is changing the perception of what “sick” looks like.

People often judge others by what they see, though, the truth is we all know looks can be deceiving.

Elyse Barnard – Hallie’s Mom

Register for the chance to save a life

Learn more about Hallie and how you can be a hero at:

#TeamHallieBea #halliesheroes #GetSwabbed#dkms #deletebloodcancer #savinglives#tinylifesaver #pigtailscanchangetheworld#beasuperhero #thisisDBA #dba#diamondblackfananemia #raredisease#invisibleillness #kindnesscounts #charity #give