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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