Facebook inquiry leads to design match

Jessica McRackan didn’t know what to expect when she sent out a post on Facebook updating friends on the status of her fourteen-month old daughter Rosie, who was born without her entire right leg and left forearm.

McRackan found out about her daughter’s condition while 22 weeks pregnant. She and her husband were shocked but when she found out Rosie was healthy, that’s all that mattered.

With doctor’s scratching their head as to what might’ve been the cause of the missing limbs, McRackan was told it was not due to genetics but it could be amniotic band syndrome which occurs when the fetus becomes entangled in fibrous string-like amniotic bands while in the womb. This restricts blood flow and could affect the baby’s development. Even that prognosis did not match Rosie completely because she did not have tell-tale signs of the syndrome.

“Whenever there is some new news about Rosie, we post it on Facebook and tell everybody cause you never know who can help. One of the updates we sent out was when we went to Shriner’s [hospital] where we’re in the process of getting a new leg,” says McRackan.

With the new leg ready a month away, Rosie will only be able to wear it a few minutes a day to get use to “walking.” Even without her leg and arm, Rosie is able to crawl extremely fast and lift herself up indoors. However, outdoors it’s another story.

To get Rosie moving more comfortably outdoors, Shriner’s hospital suggested the “Star Car,” a rolling chair vehicle that could help Rosie get around. Only catch is that it is not manufactured anymore.

“We were told we need to build one ourselves,” says McRackan.

There are other vehicles like the “Gate Trainer” that Rosie could try but the seats are usually made for two legs which does not work for Rosie’s condition and causes her to fall out of the trainer.

With not much to go by and no specs to build the wheelchair-like vehicle, McRackan was able to find something similar online that a father in California built for his daughter. With some crude images posted along with the inquiry, McRackan was able to find a cousin of her husband who was willing to build it but they needed more detailed specs.

That’s when Christie Chronister, executive assistant to the Dean at the College of Design, who saw the post stepped in. Chronister knew the perfect person to procure up the specifications. After asking Chris Jordan, Director of the Materials Lab, to create some specs from the images, Jordan volunteered to build the vehicle for Rosie.

After measuring Rosie, Jordan was able to design the rolling chair loosely from her dimensions and with some design thinking.

McRackan and her daughter visited Jordan’s studio a few times to make modifications based on observations on how Rosie used the vehicle.

“We tested out to see how she likes it. I worked on the wheels from the last time she tried it. What I did, see, I ran the axle all the way across, jacked it up a little bit, added handles,” says Jordan.

With the two wheels tied together, slots for straps to prevent her from falling out, and a red handle on one of the wheels, Rosie knew intuitively to grab for the handle and was able to use the chair immediately.

McRackan was delighted to see Rosie being able to maneuver herself around with little effort and sitting upright.

“She might not be able to walk until she’s four. UNC says four and Shriner says at two and she gets her leg in a month,” says McRackan. “There are so many things and there isn’t a playbook for us.”

With Jordan committed to adjusting the chair as Rosie grows, McRackan can rest assure that with a little design know-how, Rosie will be able to play with her peers outdoors and explore the world around her.

For more information on a support network for children and parents of amputees or children with under-developed or missing limbs visit the International Child Amputee Network [I-CAN].