My son Rotem was born prematurely, but I didn’t find out until he was eight months old that he had cerebral palsy. When the doctors told me, I was in shock. Cerebral palsy is a congenital condition marked by impaired muscle coordination. Caused by damage to the motor-control centers of the developing brain, CP can manifest in different ways in different people. There may also be problems with sensation, depth perception and the ability to communicate. So while we noticed that our baby had limited movement and stiffness in his muscles, it wasn’t until an MRI was done that we had a definitive diagnosis. There is no known cure for CP, but the physical therapists treating Rotem at the time strongly advised us not to allow him to walk or even crawl because it was believed that the muscle spasms any kind of movement generates in a person with cerebral palsy would be worsened. Nowadays we know that weight bearing is very important for these children, but there was a lot of confusion back when he was a baby. When Rotem was two years old, the doctors told us, “Your son doesn’t know what his legs are. He has no consciousness of them.” That was really upsetting; I cried for over a week. While at the beginning I had listened to what the therapists were telling me, at that point I began to second-guess their advice. Some of what they were telling me didn’t make sense. I said to myself, “I’m a musician, a violinist. I know that if you don’t practice, you don’t make progress. If my son sits around all day restrained in carriages and standers, nothing is going to happen.” So despite the therapists’ warnings I started to “walk” him, to give him a little exercise. This was not an easy thing to do. I either had to bend over or get down on my knees so that I could hold him properly.
One day we were at the park “walking.” We were going down the slide and then back up the ladder, but it was very difficult. I started feeling sorry for myself. I went home and thought: There’s got to be a better way to do this. That’s when I resolved to create something that would help me “walk” with my son. My father was an engineer, and I used to watch him all the time. He even gave me tools once as a birthday present! I also have a sewing machine and I know how to sew very well. Through trial and error I worked on designing a device that would get little Rotem out of his wheelchair. First I tried tying him to a harness on my shoulders. Then I attached wooden shoes (and later leather sandals) to my legs for his feet to go into. Next I tried a hip-to-hip harness. I experimented with many different prototypes until I finally came up with something in which Rotem was bearing his full weight, his pelvis was centered above his ankles, and both his hands—and mine—were free. It took me an entire year to come up with the original design. The first time I took Rotem out in my new device, he took three steps and then collapsed. But Rome wasn’t built in a day, so we kept on trying. By the end of the week he was able to “walk” for two hours and we covered over a kilometer. This was real exercise! As time went on, my husband and I watched our son growing stronger and building up stamina. The device was also helping with his hip, leg and trunk development.
Even more importantly, my invention was giving Rotem a childhood. Strapped into the special harness, he had access to the world around him and the ability to participate in fun things. It was also a big step in helping him get close to his siblings; they were so happy to have vertical access to their brother. The harness really changed his life and ours. We could now leave the house and go on trips and outings. While many parents of children with special needs have to tote around a whole complement of equipment, we no longer did. We even started going on family vacations. Sitting in a carriage or wheelchair and being pushed around doesn’t lend itself to interesting, tactile experiences for handicapped children. When my son was in the harness, kids were able to approach him at eye level. I noticed that many children tended to forget that there was an adult standing behind him. I would just follow his lead, and this gave him confidence. It was very empowering for him. Seeing the way my invention dramatically changed Rotem’s quality of life, I was determined to bring it to other children with cerebral palsy. I began to look for someone who could help me bring my product to the market, but no one was interested and I couldn’t find any investors. The idea wasn’t taken seriously, even though it is estimated that two out of every thousand children in the United States are affected by the disorder. No one thought it would make a profit. Eventually my cousin, frustrated by my lack of success in finding funding for the venture, decided to invest.
After doing some research, I discovered a company, Leckey Designs, based in Lisburn in Northern Ireland, that specializes in the manufacture of medical equipment for special-needs children. They were very interested in the product and understood its significance. I worked with a team of engineers to modify the harness and determine the best materials, and the company set up a brand called Firefly Friends. We named the product the “Upsee” because it basically gets a child up so he can see. The harness would be sold over the Internet to help defray the cost for parents all over the world by cutting out the middleman. The Upsee works in much the same way a person might teach a child how to dance. But instead of having the child stand on your shoes as you demonstrate the dance steps, the Upsee positions the child’s feet beside the adult’s with specially designed sandals. The child stands facing forward, completely upright, and moves as the adult behind him moves, with support from the harness attached to the parent’s waist. The product comes in two sizes, for children from approximately one year of age until around eight. Many excellent therapists, parents and intervention centers in Israel participated in the development of the Upsee. We now know that children with cerebral palsy can become even more debilitated if they aren’t physically active and don’t maximize the range of motion in their joints and developing muscles. The Upsee can help them do this and it maintains their progress.
Many therapists have hailed the Upsee as a portable treadmill, improving children’s balance and their ability to hold their heads up. It aids in digestion because their bodies are now vertical, and it helps them sleep better because they’re getting a physical workout. The harness is also a valuable tool for children with Down syndrome, Rett syndrome, or other conditions that delay physical development and affect the ability to walk. The reaction was instantaneous and enthusiastic. Several thousand Upsees were sold in the first few days. Word had gotten around and everyone was waiting for it to become available. In fact, the website crashed that first day. I check the company’s Facebook page every single day. Parents are posting pictures and videos of their children bowling, dancing, petting an animal and experiencing life in the Upsee. It’s incredibly gratifying to see how other people have been helped by this product. People are always writing to me to express their thanks. I’m actually working on several other products that will hopefully improve people’s quality of life. There’s a woman in Canada who has three children with cerebral palsy. She’s using the Upsee to do choreographed dancing with her daughter. I watched a video, and it was amazing. Another mother told me she’d always fantasized about her children walking down the street holding hands—and now that dream has come true. Bringing the harness to the market was a decade in the making, so it gives me a real sense of accomplishment. I firmly believe that we mothers have to empower our kids, even if it’s from behind the scenes. In fact, it’s part of our job description: standing behind them and supporting them their entire lives, just like an Upsee!
