Category Archives: LIFE joy

Scooter Modification for Duchenne Muscular Dystrophy Diagnosis

pride scooter modification

pride scooter modification

I’ve always heard that age 8 was the time to be fearful.

At age 8, DuchenneMuscular Dystrophy seems to finally catch up with the body and weakness begins.

When Jackson was first diagnosed at (almost) 4 years old, I heard horror stories

about this age. And I set the idea in the back of my mind and I figured I’d just deal with it when the time came.

Well, the time has come.

Jackson turned 8 in April and all was well. My mommy heart soared and I thought “Yes! We have kept Duchenne at bay. This is great, we’ve beat the odds!”

Then a couple months went by and Jackson began getting weaker. He began randomly falling. He would have leg cramps and leg pains and I didn’t know what to do.

I would massage his legs and do the best I could.

I took him to see his specialist and during that trip he confirmed that Jackson was indeed getting weaker.

Months earlier I ordered a Pride Go-Go Scooter because I try to be one step ahead of Duchenne.

pride go go scooter modification

This is the Pride Go-Go Scooter that I have. 

pride gogo modification

It folds up nicely which is incredible! 

When I got it out and introduced it to Jackson he immediately was upset and couldn’t understand why he needed a scooter at his age. I explained his muscle weakness and how it would help him to get around without getting so exhausted.

He still was upset. As a Mom I wasn’t sure how to quite handle it. Jackson’s little brother, Logan, had quite the opposite reaction. He thought the scooter was the coolest thing ever.

pride scooter modification

Knowing that, I figured I’d play off of that and try to figure something out.

Then I had an idea and didn’t know if it would even work or be an option…BUT I knew I had to at least try.

So I began looking up Scooter Modifications and I got nowhere fast.

I called and emailed the company and all I was told was that there was no device or way to modify the scooter in a safe fashion.

So then I got to work and began brainstorming on my own.

I thought it would just be perfect to develop some type of skateboard/scooter board attachment.

I went to my local baby boutique called Lullaby Lane and spoke to a lovely gal named Paige.

pride scooter modification

She was so sweet and patient and listened to my crazy idea.  

She had some scooterboards that we tried fitting on to the scooter and I ended up getting two and taking them home to see if/how I could attach them.

I ended up purchasing the  UPPaBaby Vista Piggyback Ride Along Board 

pride scooter modification

I used a combination of tools to attach the board to the scooter. Here is the supply list and directions on how to build it.

Materials Needed

Thredded Rod, the diameter of the hole of the scooter

UppaBaby Scooter Board

6-inch long square 5/8″ aluminum tubing, cut to size

Drill

10/32 screws with washers on both sides

3/16″ rod (18 inches long) threaded on both ends with a nut or a fastener to keep it attached.

pride scooter modification

These pictures show very easily that to start you have to use the thredded rod to go through one side and all the way out the other.

This scooter has a tube that the rod goes through. Then I had it also go through the aluminum tubing.

pride scooter modification

Cut 2 holes into the aluminum tubing and place washers and screws on the sides to attach it.

 

pride scooter modification

Then the board is completely attached and ready for roll!

pride scooter modification

The best part too is that the scooter can still completely fold in half and the board isn’t at all affected.

pride scooter modificationI showed it to my boys and they were beyond excited.

Logan got on the back of it and off they went!

pride scooter modification

We took it out for a spin and sure enough it worked beautifully and the boys thought it was THE BEST THING EVER!

pride scooter modification

Video of boys riding modified scooter around

 

pride scooter modification

 

 


RallyCap

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I’m always on the lookout for sporting programs that Jackson can take part in, but up until recently I haven’t been able to find all that many.

I’m the type of mother that never wants their child to feel left out or that they can’t do something.

I modify things for Jackson all the time so that he doesn’t feel left out, but with sports there really is no modification. It’s adrenaline, impact, running, and competition. All things that are not good for a boy with delicate muscles.

That recently all changed when I heard about a program called RALLY CAP SPORTS.

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It is a sports  program for children and young adults with special needs. They want to create a world where people of all abilities can share in the joy of sports.

Their mission is to create positive sports environments fostering social integration, healthy living, and greater self-confidence for children and young adults with specials needs.

Each local league has passionate volunteers of students at universities. So the mission is actually two fold;

to provide transformative sports opportunities for the under-served special needs community and bring together communities by changing attitudes and opening hearts.

Here’s a short video showing Jackson at Rally Cap! {specifically at 2:09 for those impatient folks)

“Sports are a powerful avenue for people with special needs to discover new abilities, develop confidence, and find joy in every day. They also uncover a sense of belonging and inspire communities to open their hearts to people of all abilities.”   -Rallycap

Jackson has had the opportunity to participate in two of the sessions so far.

The first one he did was Basketball.

This was his first time being part of a program/team with this sport and he was thrilled.

He was so worried at first because he didn’t know how it would go and he had many questions.

“How can I keep up?”

“What if I get tired and need a rest?”

“I’m not going to be good enough.”

I explained to him how this was a special program that is different from the rest and that it would not allow him to overexert himself.

That if he was tired, he could easily take a break and come see me for a drink.

That he was in control of what he wanted to do and that if ANYTHING was too much, that he could stop anytime.

We went and he met the girls he would be playing with and pretty quickly a big smile appeared on his face.
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They had hoops of all varying sizes and he could shoot at any which one he liked.

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The pure joy on his face from making a hoop was enough to make my momma heart soar.

RallyCap+joyinjacksonsjourney

RallyCap+joyinjacksonsjourney

This program is seriously managed SO well and I couldn’t have been happier as a parent watching on the sidelines.

RallyCap+joyinjacksonsjourney

Afterward we had to celebrate by getting some ice cream of course!

Jackson knew right where he wanted to go and this time he ordered up a big sundae!

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At basketball each week he would just light up and have such a blast.

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At the end of the session he was honored and celebrated for being such a wonderful player and given a trophy.

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As you can tell…..that MAY have been his favorite part!

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Jackson also just did the Football/Cheerleading Session and yet again it did not disappoint.

He was way more apprehensive this time about doing this sport.

He’s never played football and knew that it was an impact sport.

When he first got there he refused to take part, I think it was a combination of fear + the fact that he just woke up from a nap.

But after I got out there and played a little football and then after he giggled at me and how terrible I was he gave it a shot!

RallyCap+joyinjacksonsjourney

We then found some hula hoops and that really made him giggle when we all tried to do various tricks with them.

RallyCap+joyinjacksonsjourney

RallyCap+joyinjacksonsjourney

RallyCap+joyinjacksonsjourney

and then near the end I couldn’t spot him and wasn’t sure where he moved to.

and then i saw it.

He asked his girl if he could do the cheerleading portion.

and all i needed to see were these 2 pictures to know that he was definitely enjoying himself.

RallyCap+joyinjacksonsjourney

PURE JOY.

RallyCap+joyinjacksonsjourney

If you would like more information about the RallyCap Sports program you can visit their website HERE.

“Children and young adults with special needs should be able to participate in and enjoy sports just like everyone else!”

-Paul Hooker, Founder


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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