Firefly UpSee, invented by a mom, helps special-needs kids to walk

A mom's invention is giving parents hope that their wheelchair-bound children will know what it's like to walk.

The Firefly UpSee is a harness that allows children to stand upright, attached to their parents by a series of straps, with their feet fastened into rubber shoes. As the parent walks, the child is able to move along with them.

Debby Elnatan got the idea when her 19-year-old son Rotem, who was born with cerebral palsy, was a toddler.

"He cried almost the entire first year and one day his physical therapists looked at us and said, 'Your child doesn't know what his legs are,'" the Israeli-born Elnatan explains in a video on fireflyfriends.com. Doctors told her that Rotem should not be encouraged to walk or crawl, for fear of making his muscle spasms even worse.

Devastated by Rotem's diagnosis, Elnatan went against the doctors' recommendations and tried to find a way for her son to experience walking.

“I understood that Rotem’s sitting in a carriage was not going to get him far,"she told Today.com. "Disobeying his therapists’ recommendations, I started to facilitate Rotem 'behind their backs.'"

WILLIAM CHERRYBethany Watson, 3, stands in the new Firefly Upsee next to Debby Elnatan, who invented it.

“I wanted to be standing upright while Rotem was upright and I wanted Rotem’s hands free for play and exploration.”

It took time and practice for Rotem to be able to walk for more than a few seconds. But eventually, mother and son were able to walk together at home and on errands and outings. Elnatan used the device with her son until he was 7 years old, refining it as he grew.

For the past several years, Elnatan has been working on bringing her invention to market in order to help other parents. It is now being produced by Leckey, a company in Northern Ireland, and will be for sale online starting April 7.

A group of 20 families have been trying out the device for the past three months.

"For the first time, we can do so many things as a family," Stacy Warden of Ireland, who used the UpSee with her 5-year-old son Noah, told ABC News.

WILLIAM CHERRY/PHOTO-WILLIAM CHERRYA child 'walks' with her father using the Firefly UpSee.

“He laughs and giggles, something he doesn’t do with other walking devices, which he sees as work.”

The UpSee costs $540 and is meant for children ages 3 to 8. Elnatan will host a series of webinars this week in which therapists and parents will discuss using the device.

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CEREBRAL PALSY: STRONG BONES, HEALTHY KIDS

Take away points on CP and bone mineral density - ask your neurologist. 

• Children with cerebral palsy (CP) have low bone mineral density, which means their bones are weak and at increased risk for fragilityfractures.

•  In order  to learn more about how to improve bone mineral density and prevent  fragility  fractures, a group of researchers  from Canada and  the USA conducted a systematic(review and created a clinical(practice(guideline for parents and health care providers. 

•  There is insufficient evidence to say that weight-bearing activities improve bone mineral density or prevent fractures. Still, given the safety and other  benefits of these activities, a physiotherapy consult is indicated in children with CP.

•  Calcium and vitamin D are possibly  effective in  improving  bone mineral  density,  but  there is  not  enough  evidence  to  say  vitamin  D  and  calcium prevent  fragility  fractures. Recommended daily intakes of calcium are available  for children and can be used in children with CP as well. Vitamin D  supplementation is recommended at doses of 800-1000IU daily. Blood-work and urine tests should be done at baseline and at 6-12 months. 

•  Bisphosphonates are probably effective in improving bone mineral density in children with CP and reducing fragility fractures in children who have  had fractures in the past. Given the risk of adverse effects and lack of information on the long term impact of bisphosphonates, consultation with a bone  health specialist and consideration of bisphosphonates is recommended only after the child with CP sustains a fragility fracture. 

•  DXA scans are recommended only following a fragility fracture.

Future research that evaluates osteoporosis interventions that are appropriately powered for fragility fractures as a primary outcome is critically  important  to inform  practice.  Population based studies  are  also  required  to  obtain more  accurate  information  on  prevalence  rates  of  low  bone mineral density and fragility fracture in children with CP, as well as their impact on pain and quality of life. 

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