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Duchenne Research Project

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” A young boy name Jackson was recently  diagnosed with Duchenne and is spreading the message all over the world.

At seven years old he has changed the world with his amazing and inspiring story!”  – Sydney

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Recently I was able to work with a Perrysburg Junior High’s 7th Grade Language Arts Class to do a research project on Duchenne Muscular Dystrophy.

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It was such a wonderful opportunity to share our story with these amazing students. They had to get onto Joy in Jackson’s Journey Website and using that, write a paper on what Duchenne is, how they felt about it, and to share it with two other people.

I went in one afternoon and spoke with the kids….and cried, of course, because I hadn’t shared the story with anyone in a little while and seeing all these young, talented, eager students….it just made me emotional.

After speaking with them, I went back in had the opportunity to listen to them present their papers.

I cannot even begin to tell you how amazing it was watching these kids rattle off statistics about how Duchenne affects approximately every 3,500 male births. About how they told their friends and family about Jackson.

It was so reminescent of a few years ago when I had never heard of Duchenne.

These kids hadn’t either and it was heartwarming watching them learn and share about the disease.

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“Duchenne is really sad and heartbreaking and I wish it never existed. You are in gym, running around. People are so much faster than you. You decide you should sit down.  You can’t. It’s too hard!! You finally sit down and then after about 5 minutes you decide to get up again. You’re having more trouble. You finally get back to gym and get very upset because you know why you can’t run as fast as others, why you have trouble sitting and standing. You have Duchenne Muscular Dystrophy.” – Rachel

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“Have  you  ever  heard  of  Duchenne  Muscular  Dystrophy?  It  is  also  known  as DMD  for  short.  

It  is a  severe  form  of  muscular  dystrophy  caused  by  a  genetic  defect  and  usually  only  affecting  boys.  This  rare  disease  is  mostly  common   in   boys  because  they  do  not  make  the  dystrophin  protein  in  their  muscles.

First,  only  about  1  in  every  3,500  people  have  DMD.  And  that  one  person  is  someone  named  Jackson.  Jackson  goes  to  Fort  Meigs  Elementary  school  and  is  in  first  grade.  He  was diagnosed   with  Duchenne  in  2012.  It  is  often  hard  for  Jackson  to  run  and  keep  up with  his  friends.  He  also  gets  really  sad  when  he  realizes  that  it  is  hard  for  him  to keep  up  with  his  friends.”  – Bella

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“I want to talk about this website called http://www.joyinjacksonsjourney.com/  It talks about this mother who finds out that her son has Duchenne and how she was sad and how she felt.”  – Cheyenne

“When she {Jackson’s Mom} read this she felt sick to her stomach and couldn’t sleep the whole night and was not feeling good the next morning either. That morning though when she woke up she had felt like it was all just a dream and that none of it was true but eventually had to accept the truth that her son did have Duchenne and would not be alive walking and using his legs. After she had been like this for three whole days she felt like a shell of a person”. – James

 

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“It’s the stuff that we avoid because it hurts that is exactly the stuff we need to tackle.”- Jacob 

 

 

“This has been the most shocking thing I have heard, more shocking than my dad getting cancer. A child gets this disease when they get the defective gene called dystrophin. Girls produce enough protein to fight this disease if they get a bad gene. This disease makes the child’s muscle’s change when the child grows, sadly killing the child when fully grown.

This disease DESPERATELY needs a cure, because there is nothing right now you can do to fight it. I hope that there can be a cure soon, so nobody has to go through this pain. I hope Jackson is doing well and hopefully there will be a cure very soon.” – Joshua

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” I hope that scientists help find a cure to Duchenne, If you don’t know what duchenne is then please look it up and support and help.” – Jude

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” I feel bad for parents whose kid got the disease because it’s heart breaking news to hear. Their kids will be sad to because they will want to be able to do what the others kids do but they can’t. The parents are really sad knowing that there kid can only live for a short period of time.” – Cameron

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I am SO very thankful for this opportunity to share our story with others and to help educate children on Duchenne Muscular Dystrophy.

A few weeks later it was even featured in the local paper!

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One sweet girl even knew how much Jackson LOVED Angry Birds, so she brought him a game that she used to play and wanted him to have it. She even attached a super sweet note inside that said, “Jackson you are the bravest person in the world!

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“A side note to Jackson or anyone else with Muscular Dystrophy, never give up and always keep fighting.

 Enjoy life while you have it.”  – Kolton

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Down the Rabbit Hole

Down the rabbit hole book review + joy in jacksons journey

 

I recently read “Down the Rabbit Hole” by Holly Madison.

I wasn’t sure if I was going to like it at first because I didn’t watch the show, “The Girls Next Door” but I did know who she was.

I heard a lot of buzz about the book and once I got my hands on it, I understood why.

It was a book that was hard to put down (aren’t those always the BEST kind?!)

Once she began talking about her story and what she had endured being Hugh Hefner’s “girlfriend”, I was hooked.

Below I have attached some of my favorite quotes from the book!

Quotes

 

Hopefully, once you read my story, you will be able to understand why I made some of the choices I made…

and why I also felt trapped by those choices.

I hope that sharing my mistakes can prevent someone else from making similar ones, or give someone the courage to leave a bad situation.

I was born a girl with an insatiable appetite for the extraordinary: the strange, the unusual, the glamorous, and the morbid. And I experienced all of it.

If you looked close enough, each one of Hugh Hefner’s “girlfriends” appeared to be just a little it vacant and merely going through the motions of what life OUGHT to be.

Life inside the mansion wasn’t at all what I expected it to be- not even close.

Depending on the month, week, and sometimes hour, I would waffle back and forth between precisely why I was living a life as nothing more than “Girlfriend Number One” to a man who was old enough to be my grandfather.

I didn’t want to admit that I had sold a bit of my soul for the chance at fame.

I knew that if I took my own life, that my death would be in vain; and that convinced me to not go through with it.

In truth, I didn’t really WANT to do, but i saw no other way out. Thankfully the only thing greater than my need to escape was my desire to share my experience. If I sunk my head below the water and went to sleep, no one would ever know the truth.

This really is a great book, a quick read that is really shocking and heartwarming.

You can get it HERE AT AMAZON:

Down the rabbit hole book review + joy in jacksons journey

 

 

 


I am Malala

i am malala- joy in jacksons journey

 

 

 

 

i am malala- joy in jacksons journey

I recently read this book after hearing much buzz about it.

The day that I got it into my hands, was the day that I was immersed in it.

I am fascinated by Malala and her story.

What an absolutely amazing girl.

and when I say that i was IMMERSED in it, i mean i took it EVERYWHERE i went.

Like EVERYWHERE…..and that includes working out! haha

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Here’s a brief summary of what it is about:

“When the Taliban took control of the Swat Valley in Pakistan, one girl spoke out.

Malala Yousafzai refused to be silenced and fought for her right to an education.

On Tuesday, October 9, 2012, when she was fifteen, she almost paid the ultimate price.

She was shot in the head at point-blank range while riding the bus home from school, and few expected her to survive.

Instead, Malala’s miraculous recovery has taken her on an extraordinary journey

from a remote valley in northern Pakistan to the halls of the United Nations in New York.

At sixteen, she has become a global symbol of peaceful protest and the youngest-ever Nobel Peace Prize laureate.”

Malala’s story is one that is so fascinating, beautiful, and powerful. Upon reading her book, I just HAD to save some of the beautiful things she said.

Below is my review of the book and my favorites quotes from it.

 

The Taliban shot me to try to silence me. Instead, the whole world is listening to my message now.

Yes, the Taliban shot me, BUT they can only shoot a body.

They cannot shoot my dreams, they cannot kill my beliefs, and they cannot stop my campaign to see every girl in school.

I don’t want to be known as “the girl shot by the Taliban, but instead as “the girl who fought for education”.

When a boy is born in Pakistan, it’s cause for celebration.

Guns are fired in the air.

Gifts are placed in the baby’s cot.

And the boy’s name is inscribed on the family tree.

But when a girl is born, no one visits the parents,

and women have only sympathy for the mother.

I’m named for the great young Pashtun heroine Malalai, who inspired her countrymen with her courage.

My father’s words of praise have always been the most precious thing in the world to me.

The women of the village also had to hide their faces whenever they left their homes.

And they could not meet or speak to men who were not their close relatives.

None of them could read. Even my own mother, who’d grown up in the village, couldn’t read.

Some went so far as to wear black gloves and socks so that not a bit of skin was showing.

I’d seen the wives be required to walk a few paces behind their husbands.

I’d seen the women be forced to lower their gaze when they encountered a man.

And I’d seen the older girls who’d been our playmates disappear behind veils as soon as they became teenagers.

Many of the girls in the village- including most of my own cousins- didn’t go to school.

Some father’s don’t even think of their daughters as valued members of their families.

“Why send a daughter to school?” the men often say. “She doesn’t need an education to run a house”.

When I saw how hard these women’s lives were, I was confused and sad.

Why were women treated so poorly in our country?

I asked my father this, and he told me that life was even worse for women in Afghanistan,

where a group called the Taliban had taken over the country.

Schools for girls had been burned to the ground,

and all women were forced to wear a severe form of a burqua, 

a head-to-toe veil that had only a tiny fabric grille for their eyes.

Women were banned from laughing out loud or wearing nail polish,

and they were beaten or jailed for walking without a male family member.

I asked God for the strength and courage to make the world a better place.

We didn’t know where our education would take us. All we wanted was a chance to learn in peace.

Banners that read WOMEN NOT ALLOWED were strung up at the entrance to the market.

All music and electronics shops were shut down.

Fazlullah kept up his attacks, saying that girls who went to school were not good Muslims- that we would go to hell.

My father said he was going to a meeting that night to speak out against the Taliban.

And after that he would travel to Islamabad to take the government to task for not protecting it’s citizens. 

My father, a simple principal, was taking on the two most powerful and dangerous forces in the country.

What have I done wrong that I should be afraid?

All I want to do is go to school.

And that is not a crime.

That is my RIGHT.

I told myself, “I will continue this journey of fighting for peace and democracy in my country”. I was only ten, but I would find a way.

Before I went to bed, I asked God for one more thing.

Can I die a little bit and come back, so I can tell people about it?

He Googled my name.

Malala Yousafzai, the Taliban said, “should be killed”.

 It was an invitation from one terrorist to another saying, ” Go ahead, shoot her”.

My father was near tears and I responded, “Aba, everybody knows they will die someday.

No one can stop death.

It doesn’t matter if it comes from a Talib or from cancer”.

This was my calling.

Some powerful force had come to dwell inside me,

something bigger and stronger than me,

and it had made me fearless.


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