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Cure Duchenne- Jackson

 

 

 

“God doesn’t give special kids to special parents.

He takes ordinary, imperfect people, and gifts them with his greatest treasures.

And therein, he creates special parents.”

This boy. 

My dear, sweet Jackson.

Who at (almost) 4 years old was diagnosed with Duchenne Muscular Dystrophy.

Who is now 8 years old and knows a little bit about the disease.

Who when he gets tired and fatigued or when he can’t keep up with his peers, he says (holding his head low)  “That’s the Duchenne”.

I hate that I have to watch my little boy go through this terrible disease.

I hate that I feel helpless to overcoming it.

I hate that sometimes he cries about wearing his night braces.

And as much as I explain the reasons to him, I get it, it’s uncomfortable. It’s painful. I wouldn’t want to sleep with them on all night either.

and we talk about all sorts of other diseases that people are afflicted with,

and I try to let him know that everyone is different and that we all struggle with various things.

That we should always be kind, because we have no idea what other people are going through.

And then I wonder when he complains of pain.

I want to know what that feels like,

I want to take his pain away,

I want to put myself in his shoes and experience the disease,

because no little boy should face the future that he’s going to have to.

But then I look at his adorable face and his piercing brown eyes and I think to myself, Yes….it’s true.

We all have various obstacles to face. And while this is a major one that will one day take his life….

that’s not how I’m going to view it.

I am going to make the most of each day.

I am going to create the best life possible for him.

I want him to know he is more than his disability.

That he is smart, capable, and so loved.

So tonight as I read him a story about the Exotic Birds of the World I will look at him with pure love and think to myself

Thank You. 

Thank you for teaching me so much about life that I never would have even thought about.

For not only teaching me about love, patience, and determination. But for helping me become a better human being.

One who fights for what is right and doesn’t back down, who creates awareness & gets involved in the community.

Who now loves reading animal encyclopedias and studying various dinosaur era’s only to mispronounce the name of the dinosaur and have you correct me.

For teaching me to celebrate the small things in life. Specifically today, when we went to the aquarium and you began beaming when you saw the “Deep Sea Fish Area”, and you grabbed my hand and said, “Don’t be scared mom, it’s gonna be dark in here. But that’s the only way to see the flashlight fish.”

Buddy, I know that I was meant to be your mother and I celebrate every aspect of who you are.

It is an honor to raise you and watch you grow into the little man that you are becoming.

You make me smile and laugh uncontrollably each and every day.

I love you,

Love, Mom.

 

 

“May you always run free”.

-Mom

 

 

 

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.

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

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.

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.

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 

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.

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.

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

 

Then the board is completely attached and ready for roll!

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

I showed it to my boys and they were beyond excited.

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

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

Video of boys riding modified scooter around