Looking Up With Upsee

Debby Elnatan, the mother of a child with cerebral palsy, wanted to help her wheelchair-bound son walk. And walk he has. Her invention, called the “Upsee” is transforming the lives of disabled children everywhere since it was launched into the worldwide market. A music therapist, Elnatan made the product to help her son, Rotem. The harness allows a parent to harness a child to her legs and then take steps together.

Elnatan chose a Northern Ireland-based manufacturer Leckey, to make the device as a result of their long track record in making equipment for special needs kids. As Elnatan said,

“It is wonderful to see this product available to families across the world. When my son was two years old, I was told by medical professionals that ‘he didn’t know what his legs are and has no consciousness of them.’

“That was an incredibly difficult thing for a mother to hear. I started to walk him day after day, which was a very strenuous task for both of us. Out of my pain and desperation came the idea for the Upsee and I’m delighted to see it come to fruition.”

Since 2012, designers, engineers, textile experts and therapists have been working on the product from Leckey’s Firefly team. The device includes both a harness for the child and sandals that allow the parent and child to step simultaneously and leave their hands free for play and other tasks.

One of the first UK parents to use the product, Maura McCrystal, said, “Last Sunday was a significant one for us as a family as it was the first time our son Jack was able to play football in the back garden with his dad, his brothers and our little dog Milly.”

“To see Jack playing like any other five-year-old boy made me very emotional. Jack and his brothers so enjoyed it.”

An Interview with RJ Mitte

Recently, RJ Mitte gave a lecture entitled “Overcoming Adversity: Turning a Disadvantage into an Advantage,” as part of the Illini Union Board’s monthly lecture series. If the name RJ Mitte doesn’t ring a bell, perhaps Walt “Flynn” Jr. will. This was the character that Mitte played on AMC’s Emmy-winning “Breaking Bad.” With a mild condition of cerebral palsy and a fantastic Hollywood career behind and in front of him, Mitte is worth hearing.

Before his lecture, The Daily Illini interviewed Mitte. When asked about the message that he wanted to convey to the audience, Mitte said,  “Having a disability gives you knowledge. Having a disability gives you something that most people never understand unless they live it. Disabilities try to trap you in your own body, prevent you from doing what you want. And the thing about it is, this is your body, and this is your life. You need to take it for yourself. You need to overcome these challenges because they are put in front of you for a reason, and, if you can persevere, you can do extraordinary things. People forget that.

When asked if he feels limited by his cerebral palsy in Hollywood, Mitte replied,

“I don’t feel limited to anything. I take what I can get, as any working actors should. I want to continue to work and move forward. Walt Jr. was the one CP role that I had. But now I’m working on a show called “Switched at Birth” on ABC Family, and I play a character named Campbell, and he happens to suffer from a spinal cord injury from a snowboarding accident. It’s nice to have these characters that are unique in their own way, and that each has their own defining moments. I don’t let people define me by a disability.”

The Daily Illini asked Mitte what he would want others to know about cerebral palsy and the biggest misconception he thinks people have. He replied, “A lot of people think it’s genetic. The biggest misconception about not just CP, but about all disabilities is that people think having a disability makes you disabled, that having a disability defines your life forever. And that’s not true. “

Kentucky Wrestler with Cerebral Palsy Sets the Example

Kentucky high school wrester Willie Burton could be an inspiration to us all. He ended his four year wrestling career recently with his first win. The Fairdale High School senior wasn’t just happy that he had finally won. Rather, he won against all odds since he has cerebral palsy and cannot walk.

His 6-4 victory did not go unnoticed by his teammates, who mobbed him on the map after he crawled out of the circle. As the Fairdale coach, Chris Boyd, explained, “They were tied 4-4 with like 10 seconds left in the match. Willie had a cradle locked in and he was pulling back on the cradle and finally pulled it back enough and got two points right before the buzzer. It was awesome.”

Boyd told the Courier-Journal, “When he won, I don’t think it had even sunk in yet. But it was amazing. The gym was electric.”

Willie has quite a story to tell, and it’s one that has often been quite painful. A lot of people told him along the way that he couldn’t wrestle. As he said, “…there was no way I could wrestle because I can’t even walk, and that made me want to do it even more. I’m not going to let a wheelchair or a disability hold me back.”

Willie was given up for adoption by his 17 year old mother, and Larry and Brenda Burton agreed to adopt him. Born two months premature, Willie also had hemorrhaging in his brain, and Willie was eventually diagnosed with cerebral palsy.

He went through years of surgeries to repair his spinal cord, to help straighten his hips and more. He learned to crawl at 5, and walked with a walker and his parents’ help for the first time at 7.

Finally, when Willie started high school, he got the idea to try out for wresting. Passing his physical exam, Willie’s Fairdale wrestling coach at the time, Toeupu Liu, kept a spot for him.

As Willie recounted, “I wouldn’t win, and I’d say, ‘OK, I’ll get the next one. And then I wouldn’t win again and again. But then I remembered that’s not why I was doing this. I wanted other handicapped kids to know their wheelchairs didn’t always matter.”

The current Fairdale head coach, Chris Boyd, said that other coaches have asked how their wrestlers should interact with Willie. As Boyd explained, “And I just say, ‘Uh, wrestle him. He’s not going to take it easy on your kid, so your kid shouldn’t take it easy on him.’ ”

After each loss over the four years, he looked in the stands and gave his father a thumb’s up.

Willie will next be heading to the University of Louisville and he hopes, someday, to become a personal trainer for children with disabilities.

Cerebral Palsy Twins Propel Mom Towards London Marathon

Emma Elbourne and her husband Philip are raising twins with cerebral palsy. Arriving nine weeks early in August 2012, the girls spent a good deal of time in intensive care and in the high dependency unit.

Both of the twins were found to have cysts on their brains which could eventually cause cerebral palsy. And both, today, at 18 months, have cerebral palsy. They receive regular physiotherapy for their cp. As their mom said, “They are the happiest little children who just melt your heart. They are both so determined too – they’re so lovely. We don’t know what the future holds but they are giving us the answers now. In the beginning, we were told about the worst case scenario but they make it so much better because we have them and they brighten our day, every day.”

Inspired by the strength and determination that her twins show, Emma has signed up for the London Marathon. She will be running and raising money for the charity Scope. As she said, “I love running anyway, it’s almost my therapy. I really wanted to do something for myself that would be a big achievement and if I can raise money for a charity close to my heart, that’s even better. I’ve been training when I can but Ava and Louie still don’t sleep through the night and I have work 20 hours a week, so it’s hard. A lot of the time is either spent at hospital, or looking after them, so there isn’t much time.”

While Emma’s original target was £1,800, she has already achieved that amount and has raised £1,820. As she said, “Scope and our fantastic family and friends have made Philip and I not dread the future, nor the words cerebral palsy. I’m nervous, but excited as well.”

RJ Mitte ‘Love to the Rescue Ambassador’ for Shriner’s Hospitals

When actor RJ Mitte was only three years old he was diagnosed with cerebral palsy, a neurological disorder which affects the ability to move normally. Due to poor muscle tone and coordination Mitte had been walking on his toes. He was brought to the Shriners Hospital for Children in Shreveport, where doctors recommended a non-invasive strategy to help improve his movement, muscle tone and coordination. Doctors elsewhere had recommended surgery, but the orthopedic experts at Shriners decided that a casting procedure could prove helpful.

During a large part of Mitte’s childhood he was treated at Shriners, where he also received intensive physical therapy. As a result of the efforts of the medical staff and his own dogged determination, Mitte was able to overcome much of his physical and verbal disabilities caused by cerebral palsy.

“I can’t thank Shriners Hospitals for Children enough for what they did to help me overcome the effects of cerebral palsy. Had it not been for my doctors and therapists, I would not be walking and talking as well as I am today,” said RJ Mitte. “I know first-hand that Shriners Hospitals for Children is a special place where kids are given a life of possibilities because they send Love to the rescue every day.”

As a result of this success story and the special relationship Mitte has with Shriners Hospitals, the hospital has announced that RJ Mitte will be one of this year’s national ‘Love to the Rescue Ambassadors.’® He will get his message across about the treatment he received for CP and encouragement that he need not accept any limitations on his dreams. He will discuss the dedicated people he worked with at Shriners Hospitals for Children through a series of Public Service Announcements which will be aired all year long.

“We are honored to help RJ share his story so others living with disabilities see that there really are endless possibilities to what they can achieve,” said John Cinotto, Chairman of the Board of Directors of Shriners Hospitals for Children. “Every day Shriners Hospitals for Children sends Love to the rescue by encouraging patients to accept no limits throughout their treatment process. Working with RJ will help us highlight the innovative pediatric care available at Shriners Hospitals for Children.”

RJ Mitte is a well-known actor known for his role as Walter “Flynn” White Jr. on the AMC TV series “Breaking Bad.” Since moving to Hollywood in 2006 Mitte appeared as an extra on the Hannah Montana Show, 7th Heaven and Weeds. Today Mitte performs in “Switched at Birth,” a TV series from ABC Family TV.

“Treat Me Like Everyone Else” Dreams Nine Year Old with CP

Hayden Zeleny of West Saint Paul says that her biggest dream is, “for people to treat her just like any other kid.” Hayden is nine years old, and has spastic diplegia cerebral palsy. Since she was born two months premature, she has been fighting to make her dreams reality.

Hayden recently entered an essay contest with the theme “How Dreams Lead to Success” sponsored by the Optimist Club of West St. Paul. Here her some excerpts from that winning essay.

“I have cerebral palsy. Cerebral palsy is a birth defect that can damage kids’ brains, cause tight muscles and twist bones. Sometimes I feel like it’s hard to fit in because I am different from my friends. My dream is to be treated just like everyone else and make sure people do not feel sorry for someone with a disability. In order to make my dream come true, I try to teach people about CP and what it is like to have a disability.

“It’s hard to have cerebral palsy because sometimes everyone feels sorry for you when they see you having surgery or needing adaptive technology. It also means lots of surgery and stuff that is not fun like Botox injections, physical therapy, stretching and sleeping in a knee immobilizer or wearing braces on your legs, like I do.

“Lots of times doctors, teachers and even my parents will say things might be too hard for me. I almost didn’t get to enter this contest because my mom said there were a lot of rules to follow. But my family knows I try and they say as long as I try they are proud of me. They have taught me to always be brave and strong and do my best.”

Hayden finished her essay explaining that the reason she wants to tell as many people as possible about her story is so that they will have a better understanding of what life is like for someone with disabilities. She wants everyone who will listen to understand that in reality people with disabilities are just like everyone else. Hayden’s closing words of her powerful essay were:

“Even though I am still a kid, I feel like I am doing a good job with my dream because I have taught a lot of people how to treat a person with a disability fairly. This makes me feel successful.”

Boy with Cerebral Palsy Becomes Basketball Player for the Day

Charvis Brewer, 8, got his wish recently with the Make-a-Wish Foundation. The wheelchair bound boy with cerebral palsy was drafted into the Memphis Grizzlies for a day, becoming one of the team and having a blast.

Charvis is from Tennessee and has been a Grizzlies fan his whole life. On December 29, he was given the chance to attend a Grizzlies’ practice and to meet the entire team. As his mother, Colissia Brewer, said, “Charvis doesn’t get a chance to do stuff like regular kids. He has cerebral palsy, and he cannot walk so today, it’s all about him.”

The Make-A-Wish Director of Community Relations, Miranda Harbor, said, “The smile on his face, it was a picture worth a thousand words. He was ecstatic, and we love to see these wonderful exciting moments for our wish kids when they get to see their wish come true.”

Overcoming Challenges One Cheer At a Time

McKeil Patterson has made a world of difference for the Beaufort, South Carolina High School cheerleading squad – and they have made a world of difference for her. At 16, Patterson has struggled with cerebral palsy her whole life and with many other issues.

While on the team, Patterson was getting frustrated with her teammates’ lack of focus. She brought them together and told them more about herself. As she said, “I was in bad foster homes, and I was abused for a very long time, three years. I had two broken hips, sores all over my body, I only weighed 88 pounds, and I was just hanging on for dear life.”

She continued, “I didn’t give up. When I go to therapy I give 100 percent. It might be hard, but I give 100 percent every time. It might hurt, but I give 100 percent. Today, you could never tell I was 88 pounds.”

Her speech put things into perspective and got the girls back on track.

When Patterson’s physical therapist first came to a football game, she couldn’t believe what she was seeing. As Ferguson said, “We didn’t really know what McKeil was capable of until that game.” As the therapist continued, “Sometimes she can only get her arms to her face. But when there’s pom poms involved, it’s a whole different story.”

Patterson explained her love for the game when she said, “They make me feel proud, like I’m not just a person in a wheelchair. They see me in a different way. They see me as this girl who can do anything.”

Soon, Patterson will be making more changes, moving to Charleston, South Carolina. As she explained, “There has been a family member who has stepped up to the plate and who has wanted to adopt me. I had to make a choice. … It was very tough but I’ve been gone from my family for over nine years. I think it’s time for us to be united.”

She is said to leave her cheering and her foster mom behind. But as she said about cheerleading, “It has inspired me to achieve other dreams, like one day becoming a fashion designer. Just because I’m in a wheelchair doesn’t mean that I can’t be a fashion designer. I can be.”

As junior Tori Settlemire said about Patterson, “She’s changed us 10 times more than we ever expected her to. She makes us feel like in everything we do, we need to give it 100 percent.”

Cerebral Palsy Teen Keeps Going Further

14 year old Kellisa Kain was not expected to live when she was born at 25 weeks weighing just over 2 pounds. She was diagnosed with hydrocephalus, cerebral palsy, epilepsy, amongst other disorders. But she has proven doctors quite wrong, today boasting a passion for travel and adventure. With this, she has to date visited 39 states in America, backpacking, kayaking, camping, biking, horseback riding and more.

However, this is not enough for the determined young Kain. Now, she plans to hike at least one trail in each state of America. She has already begun this mission, wheeling down the Chesser Island Boardwalk with her father Chris and sister Laurel “looking for…bears, woodpeckers, and alligators”. The aim of her plan is to increase awareness about disabled people and their needs. Just as much as able-bodied need the outdoors, so do disabled people. As father Chris Kain said, “I’ve also found that outdoor enthusiasts accept and treat Kellissa better than the general population when we are out.”

Wheelchair Doesn’t Convince the Artistic Spirit

An artist with cerebral palsy recently received quite a recognition. Ceprecia Crow, 17, is only able to hold items with her ring and pinky fingers. But she doesn’t let this get in her way. She uses a wad of tape and a chalk holder to paint and create in her art class at Frenship High School.

Recently, Crow’s talent was recognized when her drawing of a giraffe entitled “Through Chloe’s Eyes” was entered into a districtwide art competition. It was then sent to compete in the PTSA Reflections regional contest, which is a national program sponsored by the Parent Teacher Association. She was part of the special artists category, but the judges didn’t know her or her story. And she won.

Her drawing has now been selected to complete at the state level. She only discovered her talent in art this year and it has opened up all sorts of doors for her. Confined to a wheelchair, Crow can, nonetheless fly through her artwork.

As she said, “(Art) inspires me. I don’t know why, but it does. I want to be an artist some day.”
Her art teacher , Shannon Cleavelin, admits that she was skeptical when Crow started the year. She was worried that Crow would grow frustrated with the art as other disabled students of hers had. But Cleavelin said, “I think she experiences disability — doesn’t do it the way other artists do, and sometimes it bothers her. But I’ve never had her give up.”