Tuesday, October 30, 2012

Columbia Launches Center For Cerebral Palsy Patients

October 30, 2012
By V.L. HENDRICKSON

When Debby and Peter Weinberg’s son, Henry, was diagnosed with a rare form of Cerebral Palsy when he was 3 months old, the family was lucky to able to turn to the doctors at Columbia University Medical Center for care. But, as Henry approaches adulthood, he has far fewer options for care.

“Ninety percent of CP patients now live until adulthood,” Mrs. Weinberg said. “That wasn’t always the case. Now there’s a big population of patients living to adulthood and no one was focusing on them. The focus was always on pediatrics.”
“Cerebral palsy is a little bit of an orphan disease, and hasn’t attracted a lot of attention over the years,” said Mr. Weinberg, who is a founding partner at Perella Weinberg Partners LP, a global financial-services firm. The center is a collection “of efforts to help people with CP with their issues.”
Patients with cerebral palsy, a group of disorders that affects speech, movement and cognitive function, often need special treatment from doctors experienced with the range of complications that can arise from even routine operations. Mrs. Weinberg relayed the experience of one adult CP patient, in need of hip surgery, who was referred by an orthopedic surgeon to a pediatrician who had experience with CP. The pediatrician, of course, wouldn’t operate on an adult. Fortunately, the patient was able to get care at Columbia’s new center, which has already begun reaching out to the CP community.
In addition to providing treatment for patients of all ages, the center, led by Dr. David P. Roye Jr., the St. Giles professor of pediatric orthopedic surgery at CUMC, will also help coordinate care for CP patients, educate their families and caregivers and conduct research. Doctors will study the impact of various treatments, to see if they make patients “more mobile, more independent, more pain free,” said Mrs. Weinberg. “If they give patients a better quality of life—that’s the goal.”
In addition, a patient registry of CP patients has been established at the center, providing valuable data for doctors and researchers all over the country. “The patient registry is in its infant stages, but it’s already the largest in the country,” Mrs. Weinberg said. “Lack of data has always been a problem.”
Henry, the Weinberg’s son, is now 17 years old and thriving in high school. But the family, who live in Greenwich, Conn., is relieved to know he will continue to have access to the best doctors as he becomes an adult. “There’s a lot of anxiety on the part of parents as to where their children will get care,” Mrs. Weinberg said.
The new center, a celebration of which was also scheduled for Tuesday, but will be rescheduled because of inclement weather, will help alleviate that anxiety for families all over the New York region.

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Tuesday, October 23, 2012

Toilet Training Children with Cerebral Palsy

By Lee Vanderloop

Perhaps nothing is more important to a child as he or she grows older as the ability to control their bowels and bladder. With successful “potty training” comes freedom to move into the wider world, such as school or day care. It is a major developmental milestone for any child. For a child with cerebral palsy, it can be monumental.

Children with cerebral palsy frequently suffer from urinary incontinence and constipation, which can result in bowel leakage. Both of these functions are controlled by muscles, so the degree of muscle tone or strength in a child with cerebral palsy will in large part dictate how able they are to control their toilet functions.

Toilet training is expected to be obtained by the chronological age of five in non-disabled children, and by the cognitive age of five for a child with a developmental disability. Children with moderate to no level of learning disability or mobility issue were able to achieve a level of continence at age three, according to a 2006 hospital study. The study recommended that regular toilet training for these children should start around then.

In children with more severe developmental and mobility challenges, the study determined that the probability of continence is extremely diminished after the age of eight. For these children, incontinence products and external collection devices are available. Also, some studies have shown that intermittent catheterization combined with medication may also be a good option for some older children.

Types of Incontinence

Stress Incontinence – Occurs during activities such as coughing, sneezing, or exercise.
Urge incontinence – Involves strong, sudden urges to urinate flowed by bladder contraction and involuntary loss of urine.
Fecal/Bowel incontinence – The inability to control the passage of stool.
Overflow incontinence – Occurs when the bladder cannot empty completely.
Mixed incontinence – Involves multiple types of incontinence.

Bladder Function

The inability to control the release of urine is called bladder incontinence, or neurogenic bladder. The bladder and sphincter work in harmony to control urine storage and release. The sphincter is a group of circular muscles around the opening of the bladder and must be able to squeeze to prevent urine leakage. The bladder wall muscle (detrusor) must stay relaxed so the bladder can expand. In many children with cerebral palsy this group of muscles may be weak.

Incontinence can take the form of bed-wetting, uncontrolled urination during physical activities, or slow leaking of urine throughout the day.

Evaluation

The first step is to get a full evaluation from a urologist, which is a doctor who specializes in urinary issues. The doctor will want details about your child’s incontinence, so it’s a good idea to keep a three-day diary of out-puts, including amount, time of day, stressors, activities, meals, foods, liquid intake and anything else you think might be helpful.

Common Tests for Bladder Incontinence Include:

Uroflowmetry to look at lower urinary tract functions.
EMG to look at the pelvic floor.
Cystometry – a moderately invasive test and dependent on a cooperative child, cystometry in children evaluates the bladder muscle called the detrusor that contracts to squeeze out urine and then relaxes.
Urine test – the doctor will also test the urine for signs of a urinary tract infection, which can also cause bladder incontinence. Repeated infections can lead to a conditionvesicoureteral reflux, where urine travels backward into the kidneys. Another source of infection occurs when the bladder doesn’t empty completely, leaving a small amount of urine in the bladder that can collect bacteria. A 1993 London study suggests that children with cerebral palsy have increased incident of lower urinary tract symptoms.

Treatments:

Medical treatments for incontinence may include special exercises, biofeedback, prescription drugs, surgery, or surgically implanted devices to replace or aid muscles.

Basic to all these other strategies, however, is proper toilet posture. The child needs to be able to sit securely on the toilet or the potty chair. Buttock support, foot support and comfortable hip abduction are necessary to enable a sitting posture that keeps the child relaxed and prevents activation of abdominal muscles and the simultaneous co-activation of pelvic floor muscles. A therapist trained in muscle re-education can help a child learn this posture and other techniques necessary for relaxed voiding to completion.

After physical issues such as anatomical abnormalities or pelvic floor dysfunction have been ruled out, most children can be successfully treated with urotherapy and muscle training.

Standard Urotherapy

Urotherapy in this context is not to be confused with the “urotherapy” that claims to treat disorders by drinking urine. Standard, or conventional, urotherapy for children with voiding problems originated in Scandinavia in the 1980s. It describes a non-surgical and non-drug approach to treating lower urinary tract dysfunction and is defined as a bladder re-habilitation program with the goal of correcting filling and voiding problems. It usually involves education of the child and family, routine hydration, and regular voiding regimens and bowel programs. It may also include pelvic floor muscle awareness activities and biofeedback training

It’s recommended that initial steps in urotherapy should always involve education of the child and family regarding bladder and bowel dysfunction, timed voiding, adequate fluid intake, aggressive management of constipation and hygiene issues (changing of wet clothing, containment products, skin care and correct wiping technique after toileting), as well as treatment expectations and a timeline.

Toilet Training Methods

The Diagnostic Center, Southern California has developed an approach toward toilet training a child with developmental delays that it calls “habit training.” In this approach, a mental picture, signal or visual cue of a toilet becomes linked in the child’s mind with a need to void. The Center has a six-page hand-out that takes you through the steps and provides other good suggestions.

Another study, this one published in 2010 in the Journal of Urology concluded that wearing a programmable wrist watch was successful at helping many children manage daytime bladder control problems. The study also suggested that timed bathroom trips are a crucial part of urotherapy for daytime incontinence.

Drug Treatments

Drugs used to treat bladder or bowel incontinence target the muscles used in these functions. All have side effects. As of 2009, there were no approved drug therapies known to the International Children’s Continence Society. The ICCS recommends that alpha blockers and Botox may be considered alternatives only when other treatments, such as behavioral therapy, have failed, and then only with appropriate parental counseling.

Surgical Options

There are a number of surgical interventions that treat incontinence caused by an underlying physical abnormality or disorder. The Mayo Clinic offers a comprehensive listing and descriptions of them.

Of note is a study conducted by the Women’s Specialty Center of Central Maine Medical Center that showed a procedure known as sacral neuromodulation which has the potential as a valuable tool in treating incontinence associated with CP.

Bowel Function

The ability of a child to learn to control bowel function, like urinary function, depends on degree of muscle control and mental awareness of feelings to void. The age at which this happens will depend on the developmental age of the child and muscle tone.

Bowel function is controlled by muscles of the anus and sphincter. An inability to squeeze the sphincter tightly enough can lead to leakage. Chronic constipation, in which stool blocks the rectal passageway, can lead to damage to the muscle walls, worsening the ability to close tightly. So again, a child with muscle tone issues will likely have some bowel control issues.

The first step, of course, is a full medical evaluation by a specialist in bowel issues. These specialists are called gastroenterologists. They will rule out physical anomalies such as blockages, and make treatment decisions about surgeries and medications that might help.

Constipation affects many children with cerebral palsy. Laxatives are not recommended. Instead, dietary changes and making sure your child gets plenty of liquid is the first approach. A dietitian or your pediatrician can recommend other approaches to constipation.

Bowel retraining, consisting of exercises and biofeedback, can help a child strengthen those muscles and to become aware of the urge to defecate.

In some cases, the use of special fecal collection devices to contain the stool and protect skin from breakdown might be recommended. These devices consist of a drainable pouch attached to an adhesive wafer. The wafer has a hole cut through the center, which fits over the opening to the anus.

Additional Resources

International Children’s Continence Society
http://www.i-c-c-s.org/ provides in-depth information on “The Management of Dysfunctional Voiding in Children” – A Report from the Standardization Committee of the International Children’s Continence Society. The society’s discussions resulted in guidelines on the assessment, non-pharmacological and pharmacological management of dysfunctional voiding. The final includes relevant research when available as well as expert opinion on the current understanding of dysfunctional voiding in children.

European Urology, Editorials, Twenty Years of Urotherapy in Children: Have We Learned?

Piet Hoebeke, Publ. online 4 January 2006 pgs 426-428

http://www.europeanurology.com/article/S0302-2838(05)00854-7/fulltext

The Agency for Healthcare Research and Quality under the U.S. Department of Health & Human Services lists guidelines in the Management of neurogenic bladder in children. In: Guidelines on pediatric urology.

http://www.guideline.gov/content.aspx?id=14433

It’s the opinion of the International Children’s Continence Society that the most comprehensive programs incorporate continued elimination education, continued voiding diaries and exercises between possible biofeedback sessions

http://i-c-c-s.org/index.php?option=com_content&task=view&id=39&Itemid=55

Secondary Conditions and Disability, Margaret A. Turk, The National Academies Press NAP

http://www.nap.edu/openbook.php?record_id=11579&page=185

http://kidney.niddk.nih.gov/statistics/uda/Urinary_Incontinence_in_Children-Chapter12.pdf

For more information on Cerebral Palsy please visit:
http://www.cpfamilynetwork.org

Monday, October 22, 2012

Student Finds Inspiration In Runner With Cerebral Palsy

October 22, 2012
By Arian Smedley

For Colt Yinger, a 13-year-old at Nelsonville-York Middle School, sports are second nature. He’s in his first year of cross country, plays football and performs in wrestling competitions around the country. He’s the type of kid who goes running with his dad even after a grueling football practice.

When he met Lucas Norman, a fellow 13-year-old cross country runner who suffers from a mild form of cerebral palsy, Yinger saw another example of dedication and hard work.

Cerebral palsy refers to a number of neurological disorders that affect body movement and muscle coordination, according to the National Institute of Neurological Disorders and Strokes.

“Seeing he has more trouble than everybody else race and with him having his problems really upset me,” Yinger said. “As I was watching him race every race to the best of his ability, giving it all he has, that inspired me. It inspired me to do what I did.”

Their last meet, the Tri-Valley Conference, was held on Oct. 13 at Wellston Middle School — Norman’s home school. When Yinger completed his race — placing sixth overall — he ran back to Norman and ran alongside him for the remainder of the course, encouraging him and cheering him on. That kind of gesture is appreciated even within one’s own team or in practice, but with an opponent and in competition, it stands out even more so.

This wasn’t the first time Yinger offered the support. When Norman tripped and lost his shoe in an earlier meet, Yinger picked up his glasses and helped him up, urging him to continue.

“I thought that was pretty nice of him,” Norman said Friday. “My mom said most people wouldn’t do that anymore.”

But that wasn’t enough for Yinger. After receiving his medal at the conference, he decided to give it to Norman to keep.

“This young man represented his school, Nelsonville-York, in such a positive way,” wrote Shelley Norman, Lucas’s mom, on the website www.trivalleyconference.com.

“I didn’t know what to think about it; he was really nice for doing it,” Norman said.

“For someone as a seventh grader to be that altruistic and think about other people makes me the most proud of him,” said Assistant Coach Noah Watkins, who was the acting head coach on the day of the last meet.

“(Colt) has been blessed with a lot of athleticism,” Watkins continued. “For him to see someone who wasn’t given everything that he was given athletically, he sees that as inspiration to see someone fight through a disability and overcome the odds. Plus, he’s found a friend out of it.”

Of the support he gets from Yinger and others, Norman said it can go both ways.

“It can get loud, and sometimes that makes me nervous, but sometimes when they’re cheering you on, you’ll just go faster,” he said.

When told Yinger is inspired by him, Norman said, “I think it’s really cool that he thinks of me like that.”

“I didn’t expect any attention to come to this,” Yinger said. “This is just something I just knew that I had to do, and I felt it was right to do.”

Shelley Norman wrote that she has found hope for the next generation.

“He is a true role model, and I will be forever grateful for the confidence he instilled in my son with one random act of kindness. … I am so proud of them both,” she continued.

Norman, whose participation this year was the first time he’d ever joined a sport, said he plans to run again next year. He’s also planning to wrestle and run track.

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Tuesday, October 16, 2012

What Works For CP Kids Photo & Video Contest!

Have you entered our “What Works For CP Kids” photo/video contest? We are giving away 2 iPads with apps! http://www.cpfamilynetwork.org/stories/cp-family-network-ipad-giveaway-photo-contest-rules

http://youtu.be/JChidj_Z54I

Friday, October 12, 2012

Inspiring Kindergartners With Cerebral Palsy Compete In Race

October 12, 2012
By Todd Civin

As I begin to get up in years, having just crossed the half a century mark, it brings me immeasurable joy each time I witness the next generation begin to play a positive role in shaping our future.

As a close friend and fan of famed father and son triathletes, Dick and Rick Hoyt, I often wonder if there is an inspirational team waiting in the wings to carry forth the message of inclusion, acceptance and disability awareness that Team Hoyt has etched into our society over the past three decades.

Despite the fact that Rick Hoyt was born as a spastic quadriplegic with cerebral palsy, he has been pushed, pedaled and paddled to the finish of nearly 1,100 athletic competitions by his father, Dick, to the amazement and pleasure of fans around the globe.

So it literally sent shivers up my aging spine when I learned of the inception of a young running team that has been affectionately referred to as, “The Protégés.”

Unlike the Hoyts, who are now age 72 and 50 respectively, the Protégés barely register on a calendar, at age six and five. That’s right. The heirs to the inspirational throne are barely old enough to attend grammar school and yet are lacing them up for a mile run together this November 10 in Norfolk, VA.

Like the Hoyts, the Protégés race with one teammate acting as the pusher and the other covering the miles in a wheelchair, taking in the sights and sounds of the adoring crowd, yet every bit as much the athlete from the starting gun to the finish line.

Jayden Nogueras, age six, attends the Peebles Elementary School in Bourne, MA, and despite the fact that he was born with Chromosome Disorder of 1p36 Duplication, Cerebral Palsy and Septo-Optic Dysplasia, he will be serving as the pusher. His five-year-old best friend and racing partner, Elson Martinez, will be enjoying the ride from his specially designed running chair.

Elson was a preemie born at 32 weeks in April of 2007. He was 14 inches long and weighed 2 lbs 15 oz. at birth. Elson spent the first six months of his life in neo-natal intensive care before being transferred to the step down unit where he stayed until December 24, 2007.

He spent Christmas at home, but after only two weeks was readmitted until June 2008. Elson endured 13 surgeries in his first year of life. He had to have half of his intestines removed because they did not form correctly, causing blockage.

Elson had a VP shunt and a VA shunt placed due to his Aqueductal Stenosis not properly forming. He has had several revisions to the shunts. Elson has been diagnosed with Hydrocephalus, Absence of Corpus Calosum, Seizure Disorder, Cerebral Palsy, and Developmental Delay. He currently attends kindergarten at Pembroke Elementary.

“Jayden stated last school year, he wants to be a ‘Team Hoyt pusher’ shared his mother, Mary-Liz, who together with her husband, Jose, recently founded my Team Triumph Cape Cod (mTT-CC), a running team comprised of Captains (riders) and Angels (pushers).

Jayden was the inspiration and motivation for the formation of mTT-CC. “Then jokingly, we asked him who he was going to push because he’s so small and many of the other riders are bigger and older than him. He then responded, ‘Elson is small, too. I can push Elson.’”

Jayden, who stands all of 42 inches tall and tips the scale at a feather-like 36 pounds, began his racing career in 2010 with Team Hoyt Virginia Beach as a rider (captain). It wasn’t until May of 2011, while visiting the Hoyts at their home in Holland, MA that he vacated the chair and traversed a 50-yard dash course on his own.

At that point, Jayden became a “running junky” and began training daily to increase his speed and stamina. In July of that year he entered and completed the One-Mile Allen Stone Kid’s Run in Virginia Beach, VA.

Elson, who is confined to a wheel chair, is currently a “captain” for Team Hoyt Virginia Beach, where he is normally pushed by either his brother Ruben or friend and fellow Angel, Dena Goble.

In preparation for the Norfolk’s Freedom Warrior Trot 1 Mile Run, Jayden’s father, Jose is making some slight alterations to accommodate the diminutive racing team.

“We put smaller wheels on our running chair and we are talking to bike shops about the best way to lower the handlebars,” explains Nogueras, who serves as a Supply Petty Officer 2nd Class in the U.S. Coast Guard stationed at Otis Air National Guard Base in Buzzards Bay, MA.

“Jayden believes that he is now that much closer to becoming a real Team Hoyt pusher. We have to thank Team Hoyt VB’s Dennis Welch for being his initial motivator and inspiration.”

“Jayden motivates me to keep working on my running,” adds Nogueras. “I never ran or liked to run before Jayden. It’s good to see Jayden get excited about crossing the finish line and buying new running shoes.”

Jayden’s extremely proud and supportive mother, Mary-Liz, continues, “Running has played a huge role in Jayden’s self-esteem. He is also learning many life lessons such as goal setting and overcoming adversity. I think running has made him more resilient.”

To encourage and support Jayden and Elson’s run, please visit The Proteges Donation Page. All donations will help support my Team Triumph Cape Cod. Jayden and Elson have established a goal of $2000.

myTEAM TRIUMPH is an athletic ride-along program created for children, teens, adults and veterans with disabilities who would normally not be able to experience endurance events such as triathlons or road races.

For more information on Cerebral Palsy please visit:
http://www.cpfamilynetwork.org

Thursday, October 11, 2012

San Francisco Giants Coach Triplets Overcome Cerebral Palsy Adversity

October 11, 2012
By Mark Emmons

When Natalee Righetti decided to write a book about her life, she set about the project the same way she does everything: just a little differently.

She typed one-handed on her laptop.

The result was the aptly titled autobiography “Beautifully Different” where Natalee, the daughter of Giants pitching coach Dave Righetti, describes growing up one of triplets whose premature births resulted in health complications for each of them — including the cerebral palsy that caused permanent muscle weakness throughout the left side of her body.

“I never really wished that I had two good hands or two good legs,” said Natalee, 21. “The way we came into the world was such a special thing, and it was amazing that we were even alive. Even if life can be full of challenges, I wasn’t going to let my disability prevent me from doing what I want.”

That includes writing a book that she hopes will inspire other young people. It also offers a glimpse into the private family life of one of the Bay Area’s most recognizable sports figures. Dave and his wife, Kandice, long preferred to raise Natalee, Nicolette and Wes out of the spotlight so the children’s lives could be as normal as possible.

But now they’re proud that the story has been told by someone who knows it best — the child who has overcome the most.

”She really brought our life together but wrote it through her eyes,” Dave said. “There have been people over the years, like sports writers, who wanted to talk about these things, and I really never have. But to have her do it is just really special. It’s certainly not easy putting her life out there the way she has.”

There’s a reason why Kandice calls them “our miracle kids.”

The slim, self-published volume tells of how — because their mother could not carry children — they were conceived through in vitro fertilization with Kandice’s sister serving as the surrogate. Born at just 27 weeks and each weighing less than 3 pounds, they wouldn’t leave the hospital for two months and then embarked on a childhood filled with doctors, therapists and procedures.

Natalee, who was born with hydrocephalus, or fluid in the brain, endured the worst. The resulting brain damage caused the partial disability on her left side, including limited use of her arm. She took her first steps with a tiny walker and had epileptic seizures as well as five surgeries.

Nicolette lost her hearing after an allergic reaction to a medication at age 1 and would attend the Jean Weingarten Peninsula Oral School for the Deaf until she was 9. She had two cochlear implant operations that now provide 80 percent of normal hearing. While Wes needed eye surgeries, he has dealt more with learning issues.

Dave, who during his 16-year career threw a no-hitter as a Yankees pitcher and also saved 46 games in one season, occasionally talked publicly about the triplets’ health problems when they were very young. But by the time his playing days were winding down, the well-liked local sports figure known as “Rags” had stopped doing interviews about them so they wouldn’t be on public display.

What fans never saw was how hard it was on the stoic baseball man and his wife.

“There were a lot of restless nights and long drives to the ballpark,” said Dave, a San Jose native who became the Giants pitching coach in 2000. “It seemed like every month there was some new trouble. I tried to be strong and tough for my family, but looking back, it just wears you down when you see your kids like that. But I know it was toughest on them.”

Natalee fills in details as she writes with a raw honesty about growing up in Los Altos, determined not to be left out of the things all the other kids were doing. There were years of difficult physical therapy sessions and, in some ways, even more painful emotional moments of struggling to find acceptance.

“There was a time when I was very self-conscious about getting looks,” said Natalee, who today wears a constant smile and seems perfectly at ease with herself. “One time a softball coach from another team was watching me play and said: ‘You know it’s easier using two hands.’ I just said: ‘For me, not so much.’ “

A mature response for someone who was about 11 at the time, playing on a Bobby Sox team with her sister. Their father taught Natalee to play like Jim Abbott, the former major-league pitcher who because he had only one hand would catch the ball and then quickly take off his glove so he could throw it. She also played volleyball until her sophomore year of high school by bumping the ball with one arm and developing a knack at serving.

“What I’ve learned is it’s important to do whatever you want and not be worried about not being good enough,” said Natalee, who organized a Disability Awareness Day while attending Mountain View High School. “There’s always a way around challenges if you look for them.”

It helps when your siblings have your back. At a photo shoot in the Rancho San Antonio Open Space Preserve last week, it was evident how the three — now junior college students — look out for one another. Wes made sure Natalee kept her balance as they walked down a tricky dirt path. Natalee, in turn, was repeating questions for Nicolette just in case she didn’t hear them.

“It’s not like we thought about it while growing up, but in a way we’ve always been in this together,” said Wes, a music technology major who plays guitar and sings. “We were all connected in that we tried to understand what the other ones were going through.”

That was especially the case for the sisters.

“It took a lot of training just to speak,” said Nicolette, who has gravitated toward dance. “Because we both had to work so hard, we’re always talking about how to handle things.”

Doing everything one-handed has taken a toll on Natalee’s good shoulder, forearm and hand — making it difficult for her to drive. But for someone who describes herself as a “differently abled person,” it’s just something else to overcome.

“Everyone has challenges,” she said. “But I think for kids with disabilities, it’s really important to know that they’re not alone in whatever they’re going through.”

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Wednesday, October 10, 2012

Two brothers, One with Cerebral Palsy, Compete in a Triathlon

October 10,2012
View original article

Two brothers from Atlanta are running, swimming and cycling to fulfill a dream.

On a Sunday morning in Scottsboro, Kyle Pease gets ready for his second long course triathlon. Just one of the 20 races he`s competed in, in the past 2 years.

Kyle competed in his first race in 2011. But his story started 27 years ago, when Kyle was born with cerebral palsy.
Kyle’s father, Richard says, “Nobody told me how to do this, nobody wrote a book. But y’know, where do you go and ask for help? So you sort of figure it out on your own. At least in those days we did.”
As a child Kyle played wheelchair adapted sports. Then, in his mid 20`s he turned to his brother Brent, and asked him to do a triathlon.
Brent says, “There wasn’t any hesitation; I mean, it was absolutely. Let’s figure it out.”

The brothers found a way to adapt every event to their own set of needs. What is usually an individual sport, became a team effort.

“There are highs and there are lows. I think for us the hardest part is the days are typically long. We’re two people out there. I think everybody out here goes through the same ups and downs. Not everything goes the way you want it to,” Brent explains.
Through each event, like each day, Kyle pushes through, with a smile on his face.

Nearly 7 hours in piercing cold isn’t enough to dampen his mood. It is here Kyle Pease has found his place. By his brother`s side.
With each person lucky enough to cross his path, inspired by spirit.
Kyle says, “You know, just keep a positive attitude and you’ll have a gift. And we have to open up that gift and share that gift with others.”

In addition to the races they compete in, the brothers have started the Kyle Pease Foundation.
The organization helps people with disabilities reach their goals through sports.

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Tuesday, October 9, 2012

Student with Cerebral Palsy Blogs for Teens

October 4, 2012
By David Whiting

Some say forget weaknesses, focus on your strengths. But there are those who turn weakness into inspirational power.

If you’re young and have cerebral palsy, chances are you’ve heard of Katy Fetters. If you haven’t, here’s your chance to meet Fetters in her salad days. I suspect we’ll be hearing more from this college sophomore.

Fetters, now 20, launched her teen cerebral palsy blog three years ago, just won a $19,000 scholarship for an essay about her condition and this summer was profiled on national television.

When many her age aren’t sure what they’ll do with their lives, Fetters already is changing lives.

The spark? Insecurity.

• •

Fetters and her twin sister, Sara, were born at 27 weeks. They each weighed about 2 pounds.

Sara was OK. But doctors said Katy would never walk, never talk.

I meet Fetters at her school, Soka University, built on a bluff in Aliso Viejo. Standing before glistening pools, there’s a blonde in aviator sunglasses who looks as if she walked out of the MTV show “Laguna Beach.”

I’ve read Fetter’s blog. Insecure? Come on.

Fetters walks toward me. She is not fast, tilts up and down a little, sort of drags her left leg.

For a young woman raised in a culture where appearance is paramount, it’s a tough way to make an entrance.

Regardless, Fetters walks with purpose, determination and an emerging confidence.

We walk around campus, climb stairs, sit – and talk.

Those baby doctors had no idea whom they were dealing with.

• • •

Cerebral palsy is a non-progressive disorder caused by damaged motor control centers. It can occur during pregnancy and through age 3. Premature infants are especially vulnerable.

There are many forms, many stages. Fetters calls her condition mild. She explains that her brain has a hard time, sometimes an impossible time, telling the left side of her body what to do.

Her left hand works, but not nearly as well as her right. He left leg? Not so much.

But that has never stopped Fetters from doing anything. Except surfing.

Fetters grew up in Huntington Beach with a younger sister, an older brother and Sara. For a kid with CP, as Fetters calls cerebral palsy, she says hers was the perfect family.

Big brother offered a buffer when he was a high school senior and Fetters was a freshman. She had Sara and other friends as companions. And mom and dad understood the depth of human potential, of tapping into inner strength.

Her mother, Carolyn, was a rower while at UCLA where she happened to study CP. Her father, Paul, moved from Michigan to California to become a bodybuilder and is founder of the Training Spot gyms in Huntington Beach.

Growing up wasn’t about can’t. It was about can.

• • •

When Fetters was a toddler, she didn’t toddle. She crawled, combat style, arms pumping, legs following. She mastered walking when she was 3.

When friends started to skateboard, Fetters flopped on her belly and turned her skateboard into a sled.

She didn’t think much of her switch-ups. She just wanted to play. It wasn’t until the twins were 5 and Sara started riding a bicycle that Fetters grasped she was different. It took her three more years to ride a bike.

“Looking back,” Fetters laughs, “I was a nut.” A tough nut.

She joined AYSO soccer when she was 8 and didn’t stop until last year. Her secret? “Not to outrun but to outsmart.”

But on the field she mostly forgot about CP – just as her teammates did. She sometimes wondered, “Why am I so slow?”

Still, there were stark reminders. Growing up, she was supposed to do physical therapy an hour a day. A series of casts stretched her ankle. Doctors operated on her leg to lengthen a tendon. She had to wear a brace on her leg every night – she still does – and during the day for months at a time.

But her teen years proved even more challenging.

• • •

In middle school, Fetters went out for cross country and managed to keep up with the middle of the pack.

Still, one kid said she had a fake leg. Another said, “I heard you can’t run.”

Fetters used the comments as fuel, posting her best mile ever.

Understand, that mile came with suffering. “I hate running,” Fetters confesses. “It’s the hardest thing in the world.”

High school, with far more students and a much larger campus, tested her limits. “I fall a lot in general. I trip over my own feet,” she says.

One day, she took a dive in front of a bunch of upperclassmen, books and knapsack splayed. No one teased her, but she felt humiliated, defeated.

She went home and cried, withdrew. Then in the summer of 2009, before her junior year, she regrouped.

Fetters cut her waist-length hair to a bob, took ownership of what she now calls a “disability” with her fingers marking the quotes and – with the help of Stanford University student Greg Greiner – started teencerebralpalsy.com.

The blog was an instant hit. Today, Fetters gets 5,000 page views a week and hears from people as far away as Africa and Australia.

One teen: “Hi, I’m 16 and have CP (I’m in a wheelchair at the moment). I have been having a really hard time at school because I just don’t fit in.”

Fetters’ reply: “I have found that it is easier to connect with people if you are more open with them about how CP affects you.”

Fetters shakes her head, “It’s crazy to realize how much power there is in words. I had no idea I was considered inspirational.”

But it wasn’t just others that Fetters was inspiring.

• • •

Being human, Fetters has her down times. Watching herself on Fox’s show “Live Life and Win” was the best and worst of times.

“Who ever would have thought I’d be on TV,” she says, still marveling at the experience. At the same time, she hated watching herself. “I didn’t realize I walked like that. That was really overwhelming.”

But Fetters shakes off the negative and focuses on the positive, saying the show helped others find her blog, a blog she credits for a huge shift in her confidence.

For her next project, Fetters is considering writing a book about what she’s learned to help students who struggle in high school.

It could be a book for all teens.

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For more information on Cerebral Palsy please visit:
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Friday, October 5, 2012

Tyler Perry Comes to the Rescue for Woman with Cerebral Palsy

October 5, 2012
View original article

A Georgia woman with cerebral palsy is getting some help from a celebrity filmmaker after he saw a Channel 2 Action News report about her van being stolen.

Atlanta-based media mogul Tyler Perry called Channel 2 and said he wanted to give Alicia Day a brand new van, just minutes after seeing her story air Monday afternoon.

The family of the 24-year-old said someone stole her specially equipped van out of their driveway sometime Sunday between 7 p.m. and 9 p.m.
Day, who's in a wheelchair, had no idea how she would get around. Despite her disability, she told Channel 2's Diana Davis she prides herself on trying to be independent, working part-time as a greeter at Home Depot. Her mother, Hannelore Day, also relies on the $60,000-van to take Day to work and to doctor appointments. But now transportation is no longer a concern thanks to Perry, Day said.
“My mouth just dropped to the floor when I heard his voice,” Day said about her reaction to Perry’s call. Her father, who answered the phone couldn’t believe it was Perry.
He said, "Excuse me, who do you want to talk to? Who is this now?,' Day’s mother said.
Her mother said she didn’t realize the report about her stolen van would make such a difference.
After seeing the report, the Home Depot, is also pitching in. Day’s co-worker donated $5,000 to help with her medical expenses. She’ll meet the company president Friday.

As for the missing 2000 Chrysler Town and Country van, it has DeKalb County handicapped plates with license No. DP0229.

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For more information on Cerebral Palsy please visit:
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Student with Cerebral Palsy Blogs for Teens

October 4, 2012
By David Whiting