Toddler Mobility Trainer · Steelers themed, by request
Rhodes
Eighteen months old · Steelers fan since before birth
Rhodes was born with a Vein of Galen malformation. He has cerebral palsy and hypotonia, and he has never had a way to move himself forward. Here is his story.
- Who
- Rhodes, 18 months
- Diagnosis
- Vein of Galen malformation
- So far
- 13 embolizations
- Built by
- EcoPrint
Meet Rhodes
Sassy, smart, strong willed, and usually two steps ahead
Rhodes knows exactly what you want from him. He is normally busy trying to get what he wants instead. He loves anything that spins, reading Moody Monsters and Click, Clack, Moo, and, aside from his mamas, his favorite person is Ms. Rachel.
He is observant and laid back. He is perfectly happy on the porch swing watching the cars go by, or watching the golden retriever chase his ball.
He has been through more in his first eighteen months than most people go through in a lifetime. He is also still a goofball toddler who loves to laugh, play, and keep his mamas on their toes.
His story Eighteen months, thirteen embolizations, one very determined toddler Written with his family. About a four minute read.
The pregnancy was completely normal until a scan at 32 weeks. The family was living in Hawaii. That scan showed that his heart and his head were enlarged, and that there was a huge bulb of abnormal blood flow in his brain. They were told they needed to leave the island immediately, because he would not survive there.
Across an ocean in a week
Within a week they had packed up the apartment and were in New York City, in front of Dr. Fifi and her team at Mount Sinai. Four weeks after that, Rhodes was born with severe congestive heart failure and steal phenomenon.
He had two embolizations in his first week of life to begin closing down the malformation. After four weeks of kicking butt in the NICU he came home. Worsening heart failure sent him back to Mount Sinai twice on an emergency basis, once by medical flight, and he had two more embolizations.
“He has been through more in his first 18 months than most people will in a lifetime.”
His mamas
Where he is now
Rhodes has now had thirteen embolizations, an ETV for hydrocephalus, and eye muscle surgery for strabismus caused by pressure in his brain. He has cerebral palsy and hypotonia. That many hospitalizations and that many major procedures have made it hard for him to build strength consistently. Through PT, OT and speech therapy he is working on moving, communicating, and becoming more independent.
What he can do
He can sit independently, and he is starting to stand against the couch, building toward cruising and then walking. What he does not have yet is a way to move forward on his own. The core and hip stability that crawling needs is still developing.
So the gap in his day is not between sitting and standing. It is between having a mind of his own and having any way to act on it. So far an adult has always decided where Rhodes goes and how he gets there.
Holidays in the PICU
Rhodes has spent a lot of holidays in the PICU. His family makes every one of them memorable, with a great deal of help and love from the Child Life Specialists who work there.
Somewhere in all of it he became a Steelers fan, which happened before he was born and was never really up for discussion. When we asked what his TMT should look like, that part of the conversation went quickly.
Rhodes' mamas
Told with their permission
“I will make a pathway through the wilderness. I will create rivers in the dry wasteland.”Isaiah 43:19 · A recurring reminder for his family
Before the TMT How Rhodes gets around Where he is today, and the one thing none of it gives him.
01 Sitting independently
He can hold himself up in a seated position on his own. After everything, that is a hard won milestone.
02 Standing against the couch
He is starting to pull to stand, building toward cruising and eventually walking.
03 A stander with wheels
He can move it. The problem is that standing takes so much concentration and core control that he cannot use it to actually explore anything.
04 Carried
Everywhere else, an adult decides where he goes and how he gets there. He is not yet crawling, so there is no version of the day where he chooses.
Rhodes has a mind of his own and no way to act on it. Every piece of equipment he has either holds him still or asks for more strength than he has to spare.
What he needed was something that takes the work of staying upright off his plate, so the energy he does have can go into learning to move himself.
After the TMT What the Toddler Mobility Trainer changes Four things that were not available to him before.
The TMT is a light, open source, 3D printed mobility device. It seats a child securely at the right height, supports them where they need it, and lets them push themselves wherever they want to go. Every one is built to fit the child it is going to.
01 He picks the direction
For the first time, where Rhodes goes is up to Rhodes. He can follow whatever has his attention instead of waiting for someone to carry him to it.
02 Energy where it counts
Seated securely, he is not spending everything he has on staying upright. That frees him up to work on the actual skill, which is moving himself.
03 Eye level with his peers
He can explore his world at his own level and play alongside other kids from their height, rather than from a lap or from the floor.
04 Independence now
None of this replaces crawling or walking. It gives him the experience of going somewhere on purpose while he keeps working toward both.
Delivery day
Black and gold, exactly as ordered
Photographs shared with his family's permission.
- Build team
- Rhodes' TMT was designed, printed, and assembled by EDIT NAMES HERE.
What it takes to put one kid in motion The numbers behind Rhodes' build
- TMT
- MakeGood TMT kit
- The open source design we print from
- 250
- Hours printing
- Roughly, start to finish
- $200
- In materials
- The full cost of the device
- $0
- Cost to the family
- Every device, every time
What happens next
There is another family already waiting
Rhodes' build is finished. The queue behind him is not. Three ways to move it along.
One
Fund the next build
Our hours are volunteered and the files are free. What we buy is plastic and hardware. Gifts routed to EcoPrint through MakeGood go straight into the next device.
$200 covers one complete device
Sponsor a deviceTwo
Build one yourself
If you own a printer, you are most of the way there. The Toddler Mobility Trainer files are open on MakerWorld, the same ones we printed for Rhodes.
Files are open and free to use
Get the filesThree
Know a family like his
Most families never hear that any of this exists. Eligibility comes down to a sizing chart, and there is no cost and no insurance involved at any point.
No cost to the family, ever
How to request a deviceThank you to Rhodes and his mamas for trusting EcoPrint with this one, to the Child Life Specialists who have made so many hospital holidays bearable, and to MakeGood for the design and the network that made it possible.
Who made this build possible
Bambu Lab
Sponsored this build and supplies the printers behind everything EcoPrint makes.
Chatham EyeCare Center
Chatham, Virginia. Purchased and provided the filament Rhodes' TMT was printed in.
Forge Jiu Jitsu
Danville, Virginia. Purchased and provided the filament Rhodes' TMT was printed in.