Kyle's Komrades

08/03/2025

Life with Duchenne (Post #2): There are many hurdles that boys with DMD have to put up with. While not my own words, this mother of a DMD boy sums it up perfectly what living with Duchenne looks like.

I just had someone ask me how expensive out of pocket is Duchenne?
Not that bad right?
Let me tell ya..
Put aside medication and things covered by insurance (although we pay out of pocket for Tanners medication in Canada)
Let’s talk out-of pocket
You get diagnosed
Your childs walking ability will slow down and stairs will become very difficult
If you live in a house/condo that has stairs and bedrooms are upstairs and you don’t have a financial means to make the accommodations that you will need its tough
If you live In an apartment, In the city…I can’t even Inagine

Some people get the stair chair and spend $5000 thousand or more so they can go up and down the steps
We had one donated to us for Tanner to get In basement
That doesn’t last forever
You will need an elevator If you want to keep the bedrroms upstairs
Some people make their living room or dining room their kids bedroom and have a porta potty on the side
Saddest part is our kids should be able to get to every part of their house
Your doors will need to be widened…
Your bathroom will need a roll In shower with accessible sinks and 19” toilet $20 grand and ⬆️
You will need a ceiling track from the bed to wherever in house$ you need it
We could only do it to the bathroom $15/30 thousand now
We paid $11 thousand 11 yrs ago
This Is the blessing to have In your home
When you are home alone It Is an amazing devise
You will get a hoyer through insurance but it’s huge kinda like a mountain bike in your bedroom and doesn’t fit in the bathroom or get you on the wheelchair easily
It moves so slow..so slow
1945 equipment
Pool lift if you have a pool you need a pool lift $5000 thousand and ⬆️
Desks that go up and down
They live for their gaming computers and things like XBOX
We had to redo our entire kitchen
Tanner could not even go In our kitchen
Countertops that they can sit at
Kitchen tables that the wheelchairs can get under
Beds that are adjustable
Shower chairs to travel
The ramps all around the house
The traveling back and forth to a clinical trial..
I can go on an on
Oh the Vehicle!
Handicap accessible vehicles start at $40 thousand for a basic bare minimum van.
For a little nicer middle of the road
$65/75 thousand
For the really nice vans $75/110 thousand
A MINIVAN
The saddest part is most people with disabilities do not have a lot of money
Lucky families have good jobs and great families to help them
I had to fundraise, my husband was a plumber and we have 6 kids We did not have any family that helped us much
Thank God we were blessed with wonderful friends that worked tirelessly with us
Add all this up
this is just what comes to mind right off the top
All states are different
Some have horrible waivers, some have amazing waivers and some like NJ we don’t have waivers.
We have Catastrophic fund but you need to put out the money first before they refund you and most people don’t have $25 thousand sitting around
We didn’t
So ya we pay a lot out of pocket
Plan ahead..prepare Is my advice
All of this is hard on top of the cruel diagnosis 🤷‍♀️

07/27/2025

Living with Duchenne: I will be starting this series to raise awareness and highlight the day-to-day life of living with Duchenne Muscular Dystrophy (DMD).

Today we’ll talk about the effects of long-term steroid use on bone health. In a nutshell, our bones are like those of men decades older. They are like powder.

Last week when simply rolling over on a physical therapy table, I fractured my hip. It wasn't a hard transfer, just a simple movement of the body. This occurrence is all too common for boys with DMD. One common issue with DMD is osteoporosis - weakened bones and an increased risk of fractures, particularly in the legs and spine.

Many boys have to deal with fractures throughout their lifetime. There are many times that I’ve had compression fractures in my back and didn’t even know it till I had routine X-Rays at my annual checkup.

When it is a fracture in a long bone such as the femur, boys with DMD have to be on the lookout for fat embolism, which is a blockage in a blood vessel and can be fatal. I've broken my femur twice (2007 and New Years Eve 2023) and had a slight case of FES the second time.

Unfortunately, many doctors don't know much about DMD including FES and many other critical factors.

I did not seek treatment for this hip fracture, I’m powering through the pain. I may end up seeking treatment if it doesn’t subside soon.

Send a message to learn more

02/14/2025

Brazos Valley area residents, this is a great page to bookmark as a disability resource guide

https://cdd.tamu.edu/wp-content/uploads/sites/33/2025/01/2025-BCS-Dis-Conf-Program-ENG_Web.pdf

Happy Valentine's Day!

05/01/2024

I think we've uncovered part of the issue here.

We are now on day 144 since his vehicle broke down, and day 12 since United Access said it was fixed and ready to be towed back from Houston to College Station.

In the 11th hour, TWC decided they wanted TTI (Texas Transportation Institute) to inspect the vehicle before it was returned to Kyle.

We've been asking daily when that inspection will be scheduled, and by whom. TWC and United Access each said it was the other's responsibility to schedule it. Kyle's mom told them she was going to contact TTI (after all, they are an agency of the Texas A&M System and Kyle has many champions in the System) to try to get this moving along. TWC actually pre-empted her call to TTI and demanded that they do not speak with her.

Government transparency? What did TWC not want her to find? Inquiring minds want to know!

Today they finally sent the message below to Kyle's mom. Aside from the fact that it will be another 2 weeks before TTI inspects (and who knows how many more weeks if they find something that has to be remedied)............Look closely at the message. What's wrong here? [Hint: Kyle is their client]

Texas Workforce Commission
United Access

04/30/2024

Day 142 update

United Access

Texas Workforce Commission

04/26/2024

Here’s the latest at day 139 without his vehicle

Texas Workforce Commission

United Access

04/16/2024

Advocacy opportunity for our Komrades

United Access

Texas Workforce Commission

04/16/2024

Advocacy opportunity for our Komrades regarding Kyle’s vehicle.

01/21/2023

Agree!!

10/12/2021

PSA for those who have an accessible parking placard but do not have a side lift-equipped vehicle.

Some of the access aisles are 8' wide, which is perfect for a vehicle with a lift. Others are 5' wide which is worthless for a vehicle with a lift. Some accessible parking places have no access aisle, they are simply closer to the building.

If you don't have a side lift on your vehicle and there are other options, please leave the spaces with the aisles for vehicles with a lift.

Today we showed up to an event and there were 2 pickup trucks next to the only aisle wide enough for the ramp. We parked in another space with a narrow aisle and could exit the vehicle only because nobody was parked in the next space.

When we tried to leave the event, someone was parked in the next space. We had to backup and stop traffic both entering and leaving the garage while we loaded up the wheelchair. If Kyle had been driving his own car, he would have to sit there until the other vehicle left, or ask someone to go find the other vehicle owner. He would have been late to his next appointment.

If you don't dive a lift-equipped vehicle you don't think about these things. Even parking a ONE FOOT over the white line into an access aisle can render it unusable.

Thanks for spreading the word!

06/17/2021

Great article on what could happen if you’ve had a service dog. I know that dog lovers have a hard time with us, but it’s so very important

Everyone needs an understand what can happen when service dogs are working.