The ReelAbilities NJ Disabilities Film Festival took place in mid March. Some of the titles in the series included “Son of Stars,” with short “Sensory Overload”; “The Importance of Tying Your Own Shoes,” with shorts “Autism in Love” and “Be My Brother”; “Wampler’s Ascent,” with shorts “Jazz Hand” and “Dancing Outside the Box.”

The film festival was started to spotlight people with challenges and to show their abilities rather than their disabilities. Topics addressed in the films included everything from cerebral palsy and cystic fibrosis to employment, freedom of speech and more.

As Rochelle Lazarus of the Kaplen JCC said, “We run more than 70 programs a month for people with disabilities here, so we clearly have a vested interest, but the real goal of the festival is to draw all audiences to the events as a means of having an experience that speaks to the commonalities of all of us. Not what makes us different, but what we share as a common life experience.”

One of the films that was shown was called “Wampler’s Ascent” and it is a documentary about a man with cerebral palsy who climbed El Capital in Yosemite. He did so by doing 20,000 pull-ups on a specialty rigging. The staff at Cerebral Palsy of North Jersey was thrilled about the film.

As Jim McCreath, president and chief executive of CPNJ wrote in an email, “We tell them every day that while they may have to work harder than others without a disability, they can still achieve anything. A movie like ‘Wampler’s Ascent’ brings our teachings to life — our consumers have their own mountains to climb, and this movie gives them an inspirational role model who reaffirms the importance of focusing not on the challenges but on the possibilities.”

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“This is Where We Live” is a movie about a small-town handyman caring for his son who has cerebral palsy.  This is the first movie Josh Barrett and Marc Menchaca have made. While they both initially wanted to become actors, having encountered the “lack of creative control” in this profession, they started writing and directing. The script Menchaca wrote enabled the two to work together and make the film from start to finish.

The characters in the movie are entirely fictional, but Menchaca was inspired by his relationship with Thomas, a boy with cerebral palsy.  In the movie, the character August displays very similar physical behaviors.  Also involved in the movie production was disability consultant, Christine Bruno – who is a disability advocate for Inclusion in the Arts – to ensure accuracy and authenticity.

It is Barrett and Menchaca’s hope that the audience “come[s] away feeling they saw a film that is specific in its circumstances yet universal in its themes.” The movie is the first in a Texas Hill Country trilogy.

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A soon-to-be-released book with the unusual name, ifGracie and Johshnf, is about a boy called Josh and his struggles with an unnamed illness.  It is told by his younger sister Gracie and written by his mother, Susanne Gervay who is a child development specialist and children’s author.

Strathfield’s Risi family found it inspiring and received an early copy of it.  The youngest of their three children, Francesca, has cerebral palsy.  It has been a struggle for their family, with Francesca, the mother recalling trying to answer one of her children as to why Francesca couldn’t walk.  She didn’t have much of an answer, and the look on his face was like that is so unfair.

As Gervay points out, “exhaustion, love, fear and care fuse in families raising children with special needs or illness. I hoped that by emotionally engaging in the story, it will open communication where families can share, talk and celebrate each day.” The book has been a tremendous help for Francesca’s siblings, 14-year-old Stefano and 18-year-old Adele.

Cranford, New Jersey’s Jardine Academy celebrated “Read Across America Week” with a long list of activities extolling the wonders of reading, ending in a parade and dance on March 8.

“This is a culminating event to end our week,” said Cynthia Isaksen, assistant principal at the academy, and affiliate of the Cerebral Palsy League.

Isaksen said that the week was full of many fun and educational activities which kept the children interested and excited. The children learned a lot of information about Dr. Seuss and his books, and then had a breakfast consisting of green eggs and ham as a ‘hats off’ to one of Dr. Seuss’ most beloved books.

Adding to the festivities was a visit to the academy by some members of the Kean University football team, who joined in the activities with the students. Author of “Different Cousins” and “Build a Bridge and Get Over It,” Marianne Reagan also dropped by Jardine and told her own story to the students about her personal experiences as a mother of a child with cerebral palsy.

“It’s a great time to get excited about reading,” Isaksen pointed out. “A lot of the Dr. Seuss books are all about what you can be, what you can do, and that’s what we’re all about here at Jardine Academy.”

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Included in the list of beneficiaries of Terp Thon — (the collegiate dance marathons helping raise money for Children’s Miracle Network hospitals across the country) were 9 year old twins Alexander and Tess Theodorakos. They both have cerebral palsy.  For them, the toys that have been donated to the hospital where they receive treatment have been tremendous.  Indeed, it is reported that 88 percent of children with cancer also receive treatment at these hospitals.

Sometimes what is equally important to treatment is doing things to take patients’ mind off of what they are going through.  As Alexander said, “the money doesn’t always go to the really expensive medical equipment stuff;” It also goes toward the toys for therapy. For example, there were beanbag frogs that were missing eyes and somebody drew their eyes on with a Sharpie. And with the money raised, they were able to replace the frogs, and these beanbag frogs actually had eyes. Proceeds from the dance marathon are put toward a variety of hospital units, research and other areas of need.

In addition, when there are no routines, other children and families shared their experiences with the hospital and its doctors, to develop a deeper understanding of how important the fundraising is.

While there is as yet no known cure for cerebral palsy, there is treatment.  As Danica Theodorakos (the twins’ mother) notes, the symptoms can be treated and their prime doctor, Dr. Sally Evans chief of pediatric rehabilitation medicine at the Washington hospital, “really cares.”

Terp Thon has gained particular popularity because of Penn State’s 46-hour-long THON – the oldest and longest dance marathon nationwide. Executive Director of the group, Melanie Modula, was inspired by her older brother when he participated as a morale dancer in THON.  She decided to be active in fundraising. And in just four short years, the organization has grown substantially in both “fundraising and attendance,” as has the event itself.

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Over the weekend, Howard County General Hospital’s Neonatal Intensive Care Unit hosted the first reunion for families with NICU babies since 2008. The event used to be held annually, but was canceled as the recession took its toll. This year’s gathering included over 200 babies, children, parents and nurses.

One mother, Moira Mattingly, shared that she was only 24 weeks pregnant when she went in to labor. Babies born before 26 weeks are called micropreemies, and have low chances of survival. Children who do survive in the NICU often suffer from lifelong medical problems, such as cerebral palsy.

Moira recalls that her daughter’s lungs and skin were not fully formed when she was born. She required a ventilator to breath, and a humidifier to keep her skin from tearing. The baby, named Emily, stayed in the hospital for 131 days. During that time she was resuscitated numerous times, received more than 60 blood transfusions, and underwent laser surgery to prevent blindness. Now, eight years later, Emily has joined hundreds of children like her to reunite with the nurses who ensured her survival.

“The doctors and nurses who work in the hospital are a different breed of person,” Mattingly said. “I couldn’t do what those women do.”

One of the nurses, Mary Ann Kapcala, has worked at the NICU since its inception over 40 years ago.

“Forty years ago, you would never see a 24-weeker. Under 30 weeks would be a challenge; now it’s routine.” She added, “You can get pretty attached. Of course, once they’re discharged, we’re happy to see them go.”

It all started back in 1955 when Elliot Driben was an 11 year old boy with cerebral palsy. At that tender age he began seven years of speech therapy with Boston University Professor Albert Murphy. Ever since then Driben has felt nothing but gratitude for what he got from B.U., and when he became an adult, he started giving back in spades.

Today Driben is a dedicated sports fan, and it shows. Even at the age of 68, with mobility on the wane, he rarely misses a B.U. sporting event. Whether its softball games, swim meets, womens’ rowing or his favorite, hockey, Driben is there. But Driben doesn’t just attend sporting events; he has a real concern for the athletes who participate in them. Every time he meets a new athlete, he always asks the questions: what is your name, major, and plans for the future?

“He’s at everything,” said Jill Cardella, a captain on the women’s hockey team. “He doesn’t discriminate between men’s and women’s, high-profile or low-profile sport. It’s the time he spends. We feel we should give back to him — and how can you not?”

Jack Parker has known Driben during his forty years of coaching men’s hockey. Parker calls Driben B.U.’s greatest fan. Other people that know Driben say he is like the mayor of “Terrier Nation.” Either way Driben’s devotion to B.U. sports is crystal clear, expressed by his attendance at about 5,000 university sporting events ever since his first one in 1958.

Every autumn Driben sits down with Mike Lynch, the director of athletics at B.U., and they review together Driben’s annual donation of between $6,000 and $8,000, earmarked for each of the university’s 24 teams. In addition Driben usually hosts some kind of social event; this spring it will be a pizza party for the band, dance team and cheerleaders.

“He’s like the grandfather of B.U. athletics: he wants the best for you, he loves you, but he’s not afraid to call you on the carpet,” Lynch said.

Last May the university dedicated the Elliot Driben Lobby in the Case Center building which is part of the sports arena. Lynch decided that naming the lobby in Driben’s honor was the best way to recognize Driben’s dedication and generosity. Through the glass doors of the lobby visitors enter Nickerson Field, the very place where Driben attended his first B.U. game, football. His program from that very game, which was against Syracuse in 1958, is in the lobby’s display case.

Approximately 500 B.U. athletes attended the lobby-dedication ceremony for Driben. After the formalities were over Driben received a warm round of applause.

“Every single athlete from the teams was there,” Parker the hockey coach said. “It was unbelievable. He walked in, and he was flabbergasted. I get tears just thinking about it.”

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When eight-year-old Callum Brown was first diagnosed with diplegic cerebral palsy, his parents Sharon and Neil were told that it would be unlikely if he would ever be able to walk. But following pioneering surgery he had at St Louis Children’s Hospital in Missouri, he showed he will be able to walk, by taking his first steps.
The selective dorsal rhizotomy performed on Callum was undertaken to enhance muscle tone in his lower legs. To do this, the spine’s nerves are severed which then send messages to paralyze leg muscles. Once the muscles are liberated, normal movement can be resumed and the patient is thereafter able to walk. The surgery – costing £50,000 (just under $80,000) – takes five hours, and, once the patient is somewhat recovered, he or she has to undergo arduous physiotherapy.

But what has been amazing about Callum is that just four days following the surgery, he took four steps to the delight of his parents. He did encounter some pain, but then his recovery sped up and along with his sheer determination and hard work, he is set to keep on progressing. Ultimately, it is hoped that from this surgery and the physiotherapy, Callum will be able to walk unaided.
For Sharon, this journey has to date been nothing short of miraculous. She was so proud of him and was shocked that just four days post-op he took some steps. He is such a determined boy, she added, and given everything he has been through (double hip surgery and very difficult therapies), he deserves “the world.” He stood with the help of his mother and the physiotherapist and then asked if he could walk! He was moving his legs himself as they were holding his arms. While he was tired and cried a little, he kept pushing forward.
Callum has to undertake a further surgery on his hamstrings to enhance his recovery. Then he will keep going with physiotherapy.

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