Austin Ordner suffers from cerebral palsy, which has affected his right side. He has limited use of his right arm, and his right leg and foot turn to face his left. Living with his mother and grandfather in Tarpon Springs, Austin loves baseball. During his freshman year at Tarpon Spring High School, Austin befriended some players from the Spongers, the school’s baseball team. After working on his grades, Austin became a team manager in his sophomore year.

He played ball at the Winning Inning program throughout the summer, and before the start of the regular season, Spongers coach Dickie Hart invited him to join the team.“I had to make a decision during the summer whether I wanted to keep playing,” Austin said. “I was just terrible. I was really struggling. I didn’t want to embarrass myself. But I decided to keep playing. I worked too hard to just give up. In January I started to hit. I was hitting everything. I’m glad I stayed with it.

”The baseball team appreciates and respects Austin for his commitment and determination. “He’s just one of the guys,” said Tommy Grill,the team’s senior catcher. “Nobody makes fun of him. If anyone around here does, the baseball team has his back. We’re his family.”

Twenty-two months ago Addison Thompson was born five weeks premature in Lafayette General Hospital in Louisiana. At first her mother, Chrissy, thought everything was fine. After a few episodes of sleep apnea in the few days after delivery, several tests were done, including an EEG, but all came back as normal.

At four months old Chrissy began to notice that Addison was gazing in only one direction, and at her neurological check-up she was labeled as “left-side dominant.” When Addison began to walk she took steps with her left foot and dragged her right foot behind her. As Chrissy described, “Like an old person who has had a stroke.” Chrissy also noticed that Addison usually kept her right hand clenched in a fist.

At nine months old Chrissy already knew there was a serious problem with Addison, and an MRI showed that she was right. “There is a hole in her brain,” said her doctor, “And it’s kind of big.”

It turns out that Addison had a stroke at some point early in her life, and a sizeable portion of her brain has simply “melted away.” The MRI showed that about one-third of the left side of her brain was gone, with no chance of self-repair since the central nervous system generally does not regenerate.

Addison was diagnosed with cerebral palsy, with the expectation that she will have other related difficulties such as damage to her ability to develop language, understanding and expression. The best Addison’s doctor’s would predict for her was 80% normalcy, depending on whether her brain compensated.

Chrissy took action. Along with her husband Mark and other family members, she was determined to fight to give Addison the best possible outcome. A state funded intervention program called Early Steps provided services in the Thompson’s home for Addison. A private physical therapy service was also engaged, with many more to come.

The Thompson’s were especially thankful to the March of Dimes. They fund research and supported with the NICUS (newborn intensive care units) such as the one in Lafayette General. Chrissy said, “It gave us the opportunity for her to have a successful life.”

Today Addison is almost two years old. She has a 54-word vocabulary and is able to walk and talk. Chrissy says that Addison’s vision is fine. Her largest problem seems to be her right hand which does not have any fine motor coordination. Addison can even sing the refrain from “Old MacDonald Had a Farm,” and says “Bye-bye!” loud and clear. Her mom says there are still a few physical deficits, but she can live with them.

“I get a little emotional when I think of her tying her shoes,” said Chrissy. “We don’t feel sorry for her, and we have expectations.”

Perhaps surprisingly, running is not only possible for some cerebral palsy sufferers, but it can actually be helpful to their condition.  Looking a Andy Sullman, an 18-year-old runner with CP is a perfect case in point.  He trained and completed a marathon. According to Sullman, running actually helps him overcome his symptoms of cerebral palsy – making him stronger – something his traditional physical therapy is unable to achieve to the same level.  His mother points out that running has given him independence and normalcy and that it can inspire other CP sufferers.

In more recent news, it seems that Sullman isn’t alone in his desire and determination to run despite having to deal with cerebral palsy symptoms. In Louisville, 24-year-old Brian Heyburn who was born with cerebral palsy recently ran the 13.1 mile mini marathon.  Physical therapist Lisa Campbell said, “if Brian can do this, shame on us if we say we can’t.”  In addition to helping himself, he has been heling others through his running – his marathon raised money for the Kids Center.  He explained, “I really feel lucky to be a part of the Kids Center and also be able to benefit from the therapy that I received there to do something like this.”  He feels he is neither disabled nor handicapped, and he will be studying for a masters in Disabilities and Human Development at the University of Illinois in the Fall.

Another inspiring story is that of Ben Colmen, the teen runner with cerebral palsy who recently got a social media resurgence on Facebook for his achievements.  When Colmen was born with the condition, his parents never imagined he would ever even walk. But Ben shocked everyone and went running. It became his passion and his very reason for getting out of bed in the morning, as he said it provided him with “a place to belong.”  He just had a dream that most boys his age took for granted; to be part of a team. Initially, his cerebral palsy was hampering his dream, but eventually the cross country team at his school, the Hannah Yellowjackets, offered him a spot. During Ben’s last year with the team, it won Best in the Region for the first time 13 years.

There are numerous stories of hope for people with disabilities. These three individuals show the particular strength of these fine young men experiencing fantastic milestones in their lives, in spite of living with cerebral palsy.

Communicating is often a real struggle for people with cerebral palsy.  But these days, with amazing technological advances that even people without disabilities are using, the situation for individuals with speech difficulties and fine motor skills are completely changing.

CP sufferer James Belvins is one such example of the independence technology can provide.  Tyler Swett – together other students from Blackstone Valley Tech – decided to raise money to buy an iPad for Belvins through the sale of many bracelets.  They wanted to do this once they started learning how helpful modern technological devices can be for people with disabilities.  Swett pointed out that the iPad has enabled Belvins “to do the unthinkable: gain the ability to communicate.”

So how exactly can the iPad help people like James Belvins who have symptoms of cerebral palsy?  First, the iPad needs to be set up with the Augmented and Alternative Communications (AAC) applications and then the user needs to learn how to activate them.  Given that individuals with cerebral palsy have limited fine motor control, there is a learning curve involved. However, given that an iPad has a touchscreen with large icons and applications that can be more easily selected, this is a great way of facilitating the operation of a “computer” for people with CP.  Regular computers are much more difficult for people with symptoms of cerebral palsy to use.

In Belvins’ particular case, Swett has been visiting Belvins regularly at the Adult Day Health Center in Massachusetts to teach him additional touchscreen tricks on his iPad.
It is rare to see James without his iPad – it allows him a level of independents and a way to surmount his disability – out touch screen at a time.

Individuals with cerebral palsy used communication boards – a relatively cheap and practical device without any mechanical parts to facilitate some level of communication. They would get a picture of an object (toothbrush; phone; car) or printed words that they would use to show what they were trying to say.  The problem with this was the communication boards were limited in how many symbols it had.  Since the board is portable and cannot be too bulky or cumbersome, it had to be limited in its symbols.  As well, changing the symbols on the board was often tedious.  But a computer was still too difficult for many people with symptoms of cerebral palsy to use.  Thus the iPad – with its AAC applications – gives hope to many people with cerebral palsy and substantially improving their capacity to communicate.

Jack Summers is proving every day that cerebral palsy – a condition that severely impacts mobility – need not disable a person and his or her dreams.  He loves to dance, and given that he was one of last year’s British Street Dance Championships winners, he is proof of how such a condition doesn’t have to be in the way of a person’s dreams. It seems like the only “disabling” thing Summers has encountered has been discrimination.  One time he was
rejected by a dance school, but that was because it simply did not have the facilities to accommodate him.

Summers is not new to dancing.  He began his hobby when he was just seven-years-old; he figured it was a good way of keeping fit and showing others that having cerebral palsy doesn’t have to prevent someone from doing what they want to do.  He hopes that he has changed people’s perceptions in this way.  He has been a dreamer – especially vis-à-vis dance – and one of his dreams was to perform with Blaze, following his selection by Adidas, to represent Hillingdon in London.  He did, joining up with two more potential stars, who, like him, had suffered in life.

Ultimately what Summers is showing – apparently very successfully – is that no matter what ailments one is afflicted with in life, if they have a dream, they can continue to live their lives well.

A treatment that was tested on paralyzed rabbits born with cerebral palsy could help humans afflicted with the same condition. Through nomomedicine, anti-inflammatory drugs were injected into the specific parts of the brain that were damaged, using dendrimers – miniscule tree-like molecules. Within six hours of birth and treatment – according to Sujatha Kannan of the National Institute of Child Health and Human Development Perinatology Research Branch – these rabbits showed “dramatic improvement in motor function;” at five days old, the rabbits reached “almost…normal healthy levels.”

It has been assessed that the reason the drug was so successful was due to its delivery; the tiny injections were able to cross the blood-brain barrier and speedily close inflammation in the brain. Rabbits were used for the study due to the similarities in their brain developments right before and after birth with humans. Most other animals are born with their motor functions pre-formed.

Although this is interesting news and a step in the right direction for those inflicted with the cerebral palsy disorder, experts have pointed out the reality of the research – that it will take many years before it is known if this can be used for humans. It does suggest that early intervention for cerebral palsy sufferers can help to reverse brain damage. As National Institute of Child Health and Human Development obstetrician and co-author of the project Roberto Romero pointed out, “The importance of this work is that it indicates that there is a window in time, immediately after birth, when neuroinflammation can be identified and when treatment with a nanodevice can reverse the features of cerebral palsy.”

Children with cerebral palsy come from all over the world to the Saint Louis Children’s Hospital in Missouri in search of the highly successful skills of surgeon Dr. T.S. Park. As word has spreads of Dr. Park’s ability to achieve “miracles” with his surgery, the 65-year-old physician has been sought after by cerebral palsy sufferers around the world and he is attaining new heights of fame for his life-altering procedure. Most people with cerebral palsy suffer from spasticity in their legs which makes walking and sitting problematic and often causes pain, cramps and spasms.

Dr. Park’s surgery is not new; it is called selective dorsal rhizotomy and was first developed in the 1980s. Also called SDR, the operation involves cutting sensory nerves at the bottom of the spine. This achieves permanent relief from one of the symptoms of cerebral palsy, muscle spasticity. Dr. Park, whose specialty is in pediatric neurosurgery, treats children with cerebral palsy with a version of this surgery which he has refined over the years. In 1991, Dr. Park began to perform a much less invasive form of SDR in which he removes a bit of bone from one of the vertebrae to find the exact nerves that are causing the spasticity. “I have been doing this for more than 25 years and have operated on more than 2,000 children from 43 countries. The outcomes have been very, very satisfactory. For those children who were able to walk with assistance, many of them can walk by themselves. Those who were in a wheelchair can walk with a walker or crutches,” Dr. Park said.

Dr. Park did a one-year long clinical fellowship in pediatric neurosurgery and neuro-oncology at St. Jude’s Children’s Research Hospital and Le Bonheur Children’s Medical Centre in Memphis, Tennessee. Dr. Park added that: “I was fortunate to have the opportunity to perform this operation in Memphis where I was doing my pediatric neurosurgery fellowship. I must say the effect it has on children is quite remarkable, although there is a requirement for physiotherapy in the beginning of course, and it does go on for some time and requires a significant commitment from the family. It clearly does make a huge difference in the way the children walk and also they become more confident in their general well-being.”

A new treatment for cerebral palsy is showing amazing results – with a surprising combination of drugs. Twice a year at Morgan Stanley Children’s Hospital of New York Presbyterian, sufferers get injections of phenol and Botox. While most people assume that Botox is only used for cosmetic procedures, the same medicine is also being found to help cerebral palsy children to walk. When paired with phenol, which is an alcohol often used for chemical peels, the doctors at the hospital are seeing surprising and dramatic results. Dr. Heakyung Kim offers the cerebral palsy sufferers injections with the help of ultra sound that relaxes overly-tight muscles.

As Dr. Kim explained, “For me to cover more stiff muscles, I have to use more than one medication. So I start to use two medications, which allows me to cover more stiff muscles.” And for children like seven year old Dina Frank of Long Island, this treatment is making all the difference. As reported by CBS 2’s Carolyn Gusoff, Dina has started walking for the first time due to the treatment. Born prematurely with brain bleeding and with cerebral palsy, she was never able to walk. Now, as Marcy Frank, her mom explained, “Now she’ll walk around the neighborhood. We don’t need to take the wheelchair anywhere anymore. It’s incredible.”

They credit the doctor, the hospital and the coupling of these unusual drug choices for making all the difference for their daughter. As Josh Frank said, “As a parent, it’s just amazing to be able to see your daughter walk out onto the driveway and onto a school bus instead of having to be put in a wheelchair and having to be lifted onto the school bus is a life we couldn’t have even imagined a year ago.”

An amazing new product called Brainfingers is allowing one musician
(and many others) to excel at the goals he has set for himself. Chris
Jacquin had already proven himself as an accomplished composer. Due to
his cerebral palsy, however, he was unable to hold or play an
instrument.

The Brainfingers system, however, has enabled him to play the notes on
a musical score from a computer with a special headband that responds
to clicks in his jaw. As Chris explained, “Brainfingers has given me
the chance to perform some of my favourite songs and has enabled me to
perform in an ensemble.”

Rick Bamford, the music technology officer at Drake Music Scotland
explained how they’ve used Brainfingers to help Chris. As Bamford
said, “We’ve adjusted Brainfingers to be sensitive to Chris’ jaw
movements, so as he increases the pressure between his teeth he goes
through a trigger line which Brainfingers is reading. This puts him in
direct control of how the score is played back.”

The next step was to campaign for the Scottish Qualifications
Authority to recognize Brainfingers and the laptop that Chris needed
to use as a valid way to play conventional instruments. With the help
of composer David McNiven, Chris’ music teacher at George Watson’s
College in Edinburgh, Scotland, they managed to complete this task.
Chris will now be able to sit for the compulsory performance element
of his Higher music degree – something that Mr. McNiven believes will
help Chris with his future in music.

As McNiven said, “It’s changed the rules now that people can use a
laptop. The ability to play with other musicians and feel the ‘vibe’
of being in a band or orchestra is just immense.”

Recently, “Paws for a Cause” in Rancho Mirage, California combined
Animal Samaritans with United Cerebral Palsy to raise money for these
charities. According to Greg Wetmore, from the Inland Empire United
Cerebral Palsy, the idea was to combine the two groups (the animals
and the special needs kids) to “showcase to the community how special
these animals are to our special needs children.”

It seems that animals are very helpful for improving on kids’ physical
and psychological health, including kids with cerebral palsy. One
mother of a girl with cerebral palsy, Paula Brooks, said of the
program, “it’s pretty incredible and special and we’re lucky to be a
part of it.”

Some of the fundraising methods that have been used for this project
include: silent and live auctions; event tickets and more. This is
particularly important right now since substantial state funding has
been cut for both these organizations in recent time. For example, at
one point there were five after school programs, but now there are
only two.

The results of giving kids with cerebral palsy animal therapy can be
quite outstanding. For example, a six-year old with a mild case of
spastic diplegia cerebral palsy began horseback lessons at Maryland’s
Therapeutic and Recreational Riding Center (TRCC). While she enjoys
the lessons, she also benefits from hippotherapy, a special therapy
offered through horse therapy. According to the spokesperson for the
North American Riding for the Handicapped Association, Andrea
Spridgen, “horseback riding gently and rhythmically moves the rider’s
body in a manner similar to the human gait. So when you put somebody
on the horse, in order to keep their balance and be able to ride, they
have to move their entire body. It improves muscle tone, posture,
balance, coordination, and motor development.”

This is no more evident than in watching six-year-old Emily, who today
can walk heel to toe (as opposed to the other way around) and can do
so with much more ease and confidence thanks to this therapy. The
money raised for these two organizations by those in Rancho Mirage
will continue allowing cerebral palsy sufferers to benefit from a
range of programs.