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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The Vineland Sled Stars, a hockey team for the physically challenged, can stand tall and proud today. They just earned a 5-2 win and a $10,000 grant from the Ronald McDonald House Charities of the Philadelphia Region. The Vineland Sled Stars Coach Steve Bareiszis has a daughter with cerebral palsy on the team and two sons who aren’t disabled who also play. The team includes players who have many physical challenges including spina bifida, cerebral palsy, amputees, spinal cord injuries and various muscle diseases.

The grant from the Ronald McDonald House allows them to buy new equipment. As Blair Bareiszis said, “We had old, broken equipment. I had a pair of gloves that within three minutes I have a big blister on my hand and like a lot of us were out-growing our equipment.”

The coach added, “They feel like a real team now. Before they were just making due with what they had. They’re quality of play is better. And for them to present it on a day where we have a tremendous win, everybody played well, they were checking well and passing well, it just added to the day, it was great.”

If you build it, they will come. This was the mantra that propelled Baruch and Joyce Schur to build their own assisted living home for their 26 year old son with cerebral palsy. Their story is really an inspiration. Living in Chicago, the Schurs were considering uprooting their entire lives and moving out of state to find the right home for their son.

Instead, they took the matter entirely into their own hands and formed a nonprofit with five other families to offer a lovely living facility for six young men with cerebral palsy, autism and Down syndrome. Raising their own funds, buying a red-brick Georgian in Rogers Park and hiring a design team and a social services agency to staff the home, they created their dream.

Prior to this decision, the Schurs were finding themselves consumed with caring for their child with cerebral palsy. Lifting their 130 pound son from his wheelchair, visiting the doctor with him, a caring for his every need were all taking their toll.

The Shurs worked tirelessly with many others, include Shana Erenberg, a special education consultant, to make their dream come true. They found the six residents together and created the Libenu Foundation. They purchased a $400,000 three bedroom home and put another $600,000 into it to make it a seven bedroom home with handicap accessibility. Each family made financial commitments and held fundraisers.

Now, they have a beautiful location for their children. Joan Katz, one of the Libenu parents, described her elation. Her son, 25, has Down syndrome and has become a recognized artist. As she said, “As a parent, this is a blessing; but for siblings, it’s a double blessing. And for Jacob? It means he has a life.”

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In a beautiful show of support, the Chillicothe High School National Honor Society in Chillicothe, Ohio raised money recently for the awareness of cerebral palsy. At their Friday night Cavalier basketball game in the beginning of February, they did a number of fundraisers. As NHS President Sarah Lossie explained, they were doing the fundraisers both for an individual family and for United Cerebral Palsy.

As she said, “This event was actually inspired by a family: they have a daughter … she’s 12, and she’s got Cerebral Palsy,” said Lossie. “We’ve been working with them throughout this year, and we’ve been trying to benefit them in some way because they’ve been such an inspiration for us.”

In addition to the Friday night activities, the National Honor Society also created a silent auction for a quilt. As Lossie said, “It’s made out of lots of t-shirts from students at Chillicothe, and it looks pretty nice; there are some vintage t-shirts, too, which makes it unique and gives it some character as well.”

These are a few of the events that the Chillicothe High School students are doing to support a family dealing with cerebral palsy and to support the United Cerebral Palsy chapter in the area.

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An Australian study on the effects of stem cell treatment on young patients with cerebral palsy has shown highly promising results, according to research published in the scientific journal Stem Cell.

Iona Novak, associate professor and head of research at the Cerebral Palsy Alliance said, “I think this is the most promising study we’ve ever seen in the area of stem cells. This is looking like a possible path to a cure.”
The study was conducted on a group of 30 children. The young patients received a treatment course which combined EPO, rehabilitation and umbilical cord blood, where the stem cells are found. The treatment continued for six months at the end of which the children took tests to assess their motor and cognitive skills. The results of the tests showed that these children had significantly improved test scores compared with children getting other therapies. Children under the age of three years showed the most improvement.

Umbilical cord blood is donated by birthing women immediately after childbirth and then frozen cryogenically for later use in medical studies and treatments. The active factors in the cord blood that researchers are most interested in are stem cells as well as a unique type of immune cell called “regulatory T-cell.”

Other innovative treatments have been tried on patients with cerebral palsy recently, such as controlled hypothermia, achieving some success. The stem cell research however has excited researchers to a new level.

“This is the first thing that has shown a strong positive result [in stem cell research],” said Professor Novak. “I haven’t seen anything this promising for some time.”

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