Boy with Cerebral Palsy Takes First Steps after 
Life-changing Operation

By Emma Innes

A two-year-old with cerebral palsy has taken his first steps after undergoing a life-changing operation.

Abe Astur has spastic diplegia which tightened his leg muscles, restricted his movement and, until recently, forced him to use a walking frame.

His family raised £50,000 to pay for him to have a selective dorsal rhizotomy operation, in the U.S. because the procedure is not widely available in the UK.

The operation involves severing the nerves in the spine that send messages to paralyse the leg muscles. With the tensed muscles free to resume normal movement, the patient is then able to walk.

Abe’s mother Leigh, 35, from Winchester, Hampshire, said: ‘We are thrilled it went well.

‘It’s now a case of building up Abe’s muscles he has never used before and we are pleased we went through with the operation in America.

‘His surgeon says Abe will walk independently within six months of the procedure.

‘This is the best prognosis we could have wished for and Abe has been amazing.

‘The surgery was tough and we spent a week in the hospital in St Louis, Missouri, as part of a month out there.

‘But because he is so young he didn’t fully understand what was going on and he accepted everything and handled it very well.’

Ms Astur added that the surgeons believed Abe will even be able to play sports in the future.

She said: ‘This procedure should be more accessible and medical people should be more knowledgeable in the UK.

‘It’s an operation which parents in England should be aware of but it’s just so difficult to get funding.

‘We have been talking to Steve Brine, Winchester MP, about taking this issue to Parliament and he has been a fantastic help.

‘It makes my blood boil to think children have grown up with difficulty when they could have had this operation.

‘Hopefully between us we can change another child’s life by alerting people to this procedure.’

The family, including Abe’s father Gavin, 38, and sister Thea, four, held a party to thank people who donated towards the cost of the operation.

View original story.

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Woman with Cerebral Palsy Wants to Help the Blind

By Rachel Belle

When Kirkland’s Tania Finlayson communicates, what you hear is a series of beeps.

“I have cerebral palsy, which occurred at birth. My disability makes it hard for me to control my body movements. I have always been non verbal.”

Those words came out of a speaker, in a woman’s computerized voice, attached to her wheelchair. Tania tilts her head back and forth to trigger a couple of devices that allow her to use Morse Code to communicate. The Morse Code is translated to type on a screen in front of her, and then the words come out of a speaker. She started using Morse Code when she was 11 or 12 and it changed her life. She could finally communicate.

“My mom did not dress me in plaid anymore. I could tell on my brother. And I finally had the chance to annoy my dad with question after question about the world.”

Tania is out in the world. Always smiling, she met her husband Ken in a skydiving chatroom. Yes, skydiving. She has jumped from planes countless times.

“We have been together for 15 years and seven years ago we became parents to the most wonderful boy in the world. I have the best family. It still amazes me at times, how lucky I am.”

Tania was at a Flight For Sight Fun Run in Everett, an event that benefits Guide Dogs of America, when she realized just how lucky she was to have her vision.

“I am able to help others despite my physical challenge and I wanted to do more to help. So I thought driving to Spokane would challenge me and something that I could do almost on my own. I told Ken and my son first. Ken thought I was off my rocker but he supports me even so.”

From June 8th through June 11th, Tania will take to the open road and drive her wheelchair 300 miles from Kirkland to Spokane, with a goal of raising $42,000. That’s how much it costs to provide a blind person with a guide dog.

“I thought that she was crazy,” Ken said. “But, I mean, she’s come up with a lot of crazy things, I mean we met skydiving. One thing I learned about Tania is that it’s a lot more comfortable and safer to get behind her when she gets her mind in something, than get in front of her. Because if you get in front of her she’ll probably just run you over.”

Of course, Tania won’t be alone. Ken will ride his bike alongside her, as much as he can, and they’ll have a support van filled with family and friends.

When I asked Tania about where she gets her determination, she credits her family.

“A few doctors told my parents I probably wouldn’t amount to anything and would cause great distress to the family. They suggested my parents put me in an institution. But my parents did not take the advice and took the challenge. My family’s greatest gift to me was they raised me like a normal child and did not expect any less of me throughout my childhood.”

Ken says Tania designed her Morse Code translator herself, despite having a degree in recreation, not engineering, and she now markets the product to others with physical constraints.

Ken thinks she can do anything she puts her mind to.

“People say driving to Spokane is an amazing endeavor,” Tania says. “But in my eyes it is just a pebble in my journey in life to lend a helping hand to Guide Dogs of America. Hopefully I will be able to help knock a boulder out of someone’s path in their journey in life.”

To sponsor Tania’s journey, A Spokane Dash For Puppy Cash, click here or check out the Facebook page.

View original story with audio.

Cerebral Palsy Doesn't Stop This Girl From Dancing!

Jenn Solomon sent us this video of her daughter, Rachel, participating in a dance at her summer camp!

"Here is a video of my little girl Rachel, 7 years old. She made a wish at her summer camp this summer (Double H in NY) that she would be able to be in a Hip Hop recital and be on stage like a regular kid. Well, here she is! And if I do say so myself she is better than a regular kid."

http://www.youtube.com/watch?v=eRmzMCrO8OI&list=LLo60IQwMxS6xminBbofb83g&feature=mh_lolz

Abilities Expo: Enhancing the Lives of People with Disabilities

By Stacey Bucklin

We recently posted an “In the News” story from CNN about assistive technology called“Rule Your Computer with a Head-Mounted Laser Beam.” The product intrigued me (who doesn’t love laser beams?), but what really piqued my interest was the event where it was featured, something called the Abilities Expo. I did a little digging and couldn’t resist sharing this resource with the CP Family Network community.
 

THE Event for People with Disabilities

The Abilities Expo, presented by Abilities365.com, plugs itself as “THE event for people with disabilities.” They even have programs targeted specifically for kids. Registration is FREE and grants you access to exhibitors offering the latest products and services, the opportunity to participate in free workshops, and world-class events and activities for all ages.

Their website states “For the past three decades, we’ve dedicated ourselves to making a better life for the 1 in 6 Americans with disabilities. This unique forum brings the Community together to learn, network and be empowered.” Expo exhibitors cater to children and adults with disabilities and their caregivers, offering products such as:

• Assistive technology
• Daily living aids
• Medical equipment
• Mobility products
• Essential services

This video from www.karenkain.com seems to sum up the Expo pretty well. Karen is a Parent Ambassador for the 2013 Abilities Expos and has been attending the events for 17 years!

<iframe width="560" height="315" src="http://www.youtube.com/embed/XCupcga5TDc" frameborder="0" allowfullscreen></iframe>
 

Upcoming Expos

Abilities Expo events are held across the United States (and even abroad!) every few months. Chances are there’s an Expo coming to a city near you. Here’s a list of upcoming events:

• NY Metro – May 3-5, 2013
• Chicago – June 28-30, 2013
• Houston – August 2-4, 2013
• Boston – September 20-22, 2013
• Singapore – November 8-10, 2013
• San Jose – November 22-24, 2013
• Los Angeles – February 28-March 2, 2014
• Atlanta – March 14-16, 2014

Share Your Story

Have you been to an Abilities Expo or a similar event designed to serve people with disabilities? What did you think? Share your thoughts in the comments below!
 

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CP Daughter Inspires Mom’s Passion for Photography

By Sara Sprague

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Being very career focused in my 20′s, I obtained my RN rather young. I went on to spend more than a decade dedicating my life to caring for and healing critically ill children in the Pediatric Intensive Care Unit, all the while dreaming of the day I might have my own child. After marrying my Prince Charming in 2008, it wasn’t long before we were expecting a precious baby girl.

Perfect Pregnancy Ends in a Heartbreaking Birth

In June of 2009, I had succeeded at a very healthy full-term pregnancy. Thirty-two hours after I was admitted to the hospital for labor, I knew something didn’t feel right. With each passing contraction I could feel that I could not advance the fetal head. After pushing for an additional one and a half hours, my caretakers realized that our daughter was not in a position for birth. She presented ear-first instead of crown of head-first. Much more concerning than her position was the discovery that her umbilical cord was completely prolapsed, cutting off her circulation and oxygen supply. I watched helplessly as her heart rate fell from 60 to 30 to 20 to reading nothing at all. I was whisked to the operating room with the OB riding in the bed to hold the fetal head off of the umbilical cord. Just before I was put under general anesthesia, I remember thinking I needed to prep myself for the possibility of waking to the news of a stillborn.

When I woke and was taken off the respirator, I was told that “Lyric,” named for her father’s musicianship, had survived.

When I was well enough to see her for the first time, I was still in a fog, but I noted abnormal newborn posturing right away. After having her evaluated by a Pediatric Neurologist, my fears were confirmed and Lyric was diagnosed with mild cerebral palsy and double left hemiparesis. In her infancy, she was not able to use her left arm/hand much at all and kept it tucked tight to her body.

Exhausting Schedule of Treatments and Therapies

All of Lyric’s developmental milestones were delayed and as she came into her toddler years, she required extremity braces, physical, occupational, and speech therapies five to six days a week.

This schedule grew exhausting fast and I felt like we had little life outside of the intensive therapies and focusing on what Lyric couldn’t do or should be doing at her age.

I decided we needed an OUTLET. An outlet that allowed me time with Lyric, that could perhaps CELEBRATE Lyric, and help me to see some positives instead of living in the perpetual state of what she “could not do.”
 

Channeling My Creative Energy through Photography

I had always dabbled in photography and found great joy in dolling Lyric up, experimenting with lenses, lighting, adding silly props and setting scenes. I took a few photos and submitted customer appreciation photos to the various children’s clothing designers from whom I had purchased. Before I knew it, I was getting requests from more and more designers for photographs.

By the time Lyric was 12 months old, I figured it was time to get some photography education under me and some professional equipment along the way. I took various classes/mentoring, began networking with area photographers, and taught myself Photo Shop – THE MOST UN-USER FRIENDLY program on Earth! As Lyric grew, so did the demand for my photography. By the time she was 18 months old, I launched a Facebook fan page to reach a larger audience. Soon after, I was requested by area mommies to photograph their little sweet peas and as it turns out, I had a bit of a knack for I, a talent I NEVER would have realized if it weren’t for the birth of my special needs darling.

Appreciating the Irony of Life’s Little Surprises

I realize my multitude of blessings now… to be a mother to a child who has come so far in her short life to become what you see today…to be married to the most incredible father and partner I could have chosen in this journey, to be a photographer on a full time basis and an RN only part time, and to be networked with literally hundreds of like-mamas who have taught themselves to sew, build websites, and pursue numerous other entrepreneurial endeavors to help them stay at home and available for their special needs children while still supporting their families.

It’s so very ironic how life unfolds with little surprises along the way. Lyric is now 3 years old and is more inspiring and amazing to me by the day. As her parent, the fear of the uncertain future can be overwhelming but I’ve had gentle hands to guide me along this path and take one day at a time… and a photo to cherish every day.

About the Author

Sara Sprague is a Registered Nurse of 10 years dedicated to Pediatric Intensive Care & Neonatal Intensive Care. After the birth of her own special needs baby, she decided to pursue her passion for photography on a professional level so that she could be more available at home. She now runs SAS Photography, a boutique baby photography company.

Is Constraint Induced Therapy Right for Your Child?

You may have heard the term Constraint Induced Therapy (CIT) in a special-needs moms’ circle or during a therapy session with your child. Perhaps you’ve heard of its potential benefits in recent news stories. How much do you really know about CIT, and how do you determine if it’s right for your child?
 

Constraint Induced Therapy Defined

Pediatric Constraint Induced Movement Therapy or CIT is a type of treatment that teaches the brain to “rewire” itself following a brain injury. The focus is to restrict a child’s good extremity (arm, hand, leg, etc.) in order to force usage and improved function of the extremity needing rehabilitation. CIT often involves intensive training of the more-impaired extremity for a certain number of hours per day for a designated period of time. Children with a more severe level of spasticity or mobility impairment may require more daily hours of constraint and a longer period of intense therapy.

The CI Research Institute states that Constraint Induced Movement Therapy is the only rehabilitation technique shown to markedly change the organization of activity in the brain. Various studies have shown favorable outcomes suggesting that CIT may be a useful tool in the treatment of upper-extremity dysfunction in hemiplegic CP and other forms of CP.

Depending on the specific goals and level of achievement, it may take multiple sessions to realize the intended benefit.  Remember, you’re re-training the brain!!! Be patient.
 

Is Your Child a Candidate?

CIT is not appropriate for every child with cerebral palsy. Talk with your pediatrician, therapists and orthopaedic specialist to discuss whether or not your child could achieve positive results from Constraint Induced Movement Therapy.

Your child will need to be monitored throughout the course of treatment to check for any complications. Discuss with your therapist what “trouble signs” you need to look for, such as chafing, rash or skin breakdown with the restrained limb. Check fingers and toes to make sure there’s no impediment of blood flow as a result of a cast or restraining device that is too tight.
 

Goals

Your therapist should have a Care Plan mapped out, detailing the specifics of your child’s therapy plan, including hours per day, additional therapies being implemented and the overall duration of the CIT sessions. Request a copy of the Plan. You may want to create a chart or journal tracking and annotating your child’s daily sessions. Detail the length of time the constraint device is used and what skills your childed work on during the session.  Make notes of improvement and struggles.  This will give the therapist a better picture of your child’s progress or need for additional assistance.
 

Coping Mechanisms

What is CIT like for a child? Here’s an analogy. If you’re right-handed, imagine someone casting that hand, forcing you to do everything with your left! Keep in mind, you probably have normal abilities and range of motion in your left hand. What if you didn’t? What if you had no good function in your left hand and now your right hand is immobilized! While adults you have the maturity and psychological skills to cope with frustration, many children do not. Couple that with a child’s immaturity and possibly an inability to communicate and you can imagine the reaction your child may have to this type of therapy.

There will be tears! Ask your therapist how to help your child establish coping mechanisms and ways to help your child get past the frustration. Make it fun! Incorporate play therapy in your CIT sessions! You want these sessions to be productive and fun, not a screaming match between you and your child. For children with developmental disability and cognitive delay, discuss with the therapist the best ways to introduce this therapy to your child.

For children with the cognitive skills to understand, have your therapist help you explain to your child the concept and goals of the therapy. Explain the number of hours per day the constraint session will last and try to set a schedule that everyone can agree with. Be sure to consider whether or not any of the constraint hours will overlap hours your child is in school. You may want to start out small and work up. Also try to schedule hours when you can play an active roll in your child’s session. Pediatric therapy based on stringency is unrealistic. You need to be consistent but flexible. There may be days when your child just isn’t being cooperative, and you find yourself skipping an hour here or a day there. Discuss with your therapist some ideas that will give you flexibility for the unexpected.
 

Conclusion

As with any new therapy, consult your child’s doctors and care providers before embarking on a treatment plan. Do your research and weigh the benefits and risks before deciding whether or not Constraint Induced Therapy is right for your child.

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How to Take Time for Yourself

By Denise D. Aggen

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Respite care. How many parents really take advantage of this short-term break from caring for a family member with cerebral palsy? As a single mother, I was offered this many times, but never took advantage of it. My main concern was who would stay with my daughter with CP and could I trust them. My family is not able to help me with my daughter, so I have to depend on outside care for help.

With the demands of the world, you find that your plate gets too full and your shoulders begin to ache from all of the stress. Taking one evening, one day, or one weekend can help with that stress. I try to take one weekend every couple of months and do something for myself. I have a caregiver that stays with my daughter at my house for the weekend, and I plan time away.

Recently, I have found a little remote lodge and retreat in a country side location in Idaho about two hours away from my home. I rented a cabin with my own screened in porch and personal hot tub. This was located directly next to a creek in a beautiful area full of trees and peacefulness. Now you do not have to go to the extreme of traveling far away or going to an expensive retreat. Maybe plan a weekend with a friend and go sightseeing, or stay in a nice hotel suite and catch a movie. Anything that you can do that does not require you to have any responsibilities of taking care of anyone else but yourself is the whole point of respite care.

Once when I took one of my weekends away, I signed up for a watercolor painting class in a mountain location. The drive there was beautiful and the fresh mountain air was relaxing. I came back home relaxed and excited about learning something new. Finding a craft or a hobby can help with decreasing any stress that one may feel. Finding that one thing that you truly enjoy will help put a smile on your face and take the stress out of your body.

What makes you happy? What are some of the things that you like to do that help you to relax? Are there any hobbies or crafts that you have always wanted to try, but have just never found the time to do? Take that respite care time and relax. Taking care of yourself is important, because you want to be able to be healthy so you can be around to take care of your special someone with cerebral palsy. Be happy. Make it fun.

About the Author

Denise D. Aggen is a single mother of two daughters who are 23 and 16. Her oldest daughter has cerebral palsy. She is a blogger and writer and is currently working on her Bachelor of Science degree in Psychology. She keeps a blog about raising a child with disabilities and a personal blog about “random things.”

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Gray Matter Grows in Brains of Children with Cerebral Palsy Following Therapy, Study Finds

BIRMINGHAM, Alabama — What’s a little gray matter between researchers?
A lot, it seems, as University of Alabama at Birmingham scientists become the first to show that a certain type of rehabilitation can remodel the brains of children by adding gray matter.
The findings are published today in the journal Pediatrics.

The study focused on 10 children who were given Constraint-Induced Movement (CI) therapy over a course of three weeks. One MRI was taken three weeks before the therapy; one right before therapy started; and the last one after it was over, said Chelsey Sterling, a graduate student in medical psychology and first author of the study.

“Following therapy we saw increases in the kids’ gray matter in the sensorimotor cortices  and in the hippocampus,”  Sterling said. “We don’t know exactly the cause, but it is correlated with improvements in motor skills.”

Gray matter is part of the central nervous system and is made up of neurons, glial cells and dendrites
One of the study’s co-authors, Gitendra Uswatte, described gray matter as the brain’s computer chips, and the therapy adds circuits to those chips.

Constraint-Induced Movement therapy was pioneered by Edward Taub in stroke rehabilitation. Taub is a university professor in the UAB Department of Psychology and co-author of this study.
CI therapy involves constraining the good limb so that the subject is forced to use the impaired limb.
For this study, researchers focused on children who had hemiparetic cerebral palsy, or CP that primarily affects one side of the body, Taub said.

The children’s good arm was placed in a cast to induce the restraint.
But the restrain aspect is only one small part of CI therapy, Taub said.
Successful therapy also involves the continuation of work at home involving family members to help the child focus on daily living activities: brushing their teeth, combing their hair and putting on shoes.
It’s not always easy, Taub chuckled, remembering when one child was asked to do something.
The child responded: “I have CP. Hasn’t anyone told you!”

While the study found a correlation between the increased gray matter and improved motor skills, it’s too early to which one caused the other, researchers said.
“The brain change could cause the motor improvement or the motor improvement could cause the brain change,” Taub said.
Uswatte is preparing to embark upon a study which may get closer to answering that question.
In the pending study, researchers would combine CI therapy with the administration of Prozac, or fluoxetine.

The study, he hopes, “will go some way to showing there is a causal relationship.”
Unfortunately, Uswatte said, the $2 million grant for the study is on hold due to sequestration – that series of automatic budget cuts directly caused by Congress not agreeing on a budget.
“There’s lots of research that is ready to go that can help people and help patients that can’t be done because of the stalemate over the budget,” Uswatte said.

Jack Carroll, 14-Year-Old ‘Britain’s Got Talent’ Contestant And Comedian, Is Our New Hero

From The Huffington Post

“Dont worry, I know what you’re thinking: Harry Potter’s had a nasty quidditch accident.”
Fourteen-year-old Jack Carroll opened his audition for “Britain’s Got Talent” with this line, and the act that followed was easily one of the most memorable — and hilarious — of the popular British reality show. The young aspiring comedian has cerebral palsy and faced Simon Cowell and the other judges using a mobility aid on last week’s episode.

But the teen didn’t want his cerebral palsy to be what he called “the elephant in the room.” Instead, he used his short stand-up routine to poke fun at himself and the challenges he faces having a physical disability.

When the teen finished, he received a standing ovation from the audience and judges, and David Walliams called him a “comedy genius.” Watch Jack’s incredible performance in the video above.
“A lot of times in comedy, your weaknesses are your strengths,” he explained backstage, adding that his other strength was “bring[ing] joy to the world.”

We couldn’t agree more. Jack, you rock.

Was My Daughter’s Cerebral Palsy Preventable?

By Ellen Robertson

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Every parent of a child born with a brain injury asks themselves, “Was my child’s birth injury preventable?” Very few find the answer to that question. Why? Many times, they’re convinced by the physicians and other medical personnel involved in their child’s delivery that “these things happen.” How many parents actually take the steps to investigate their child’s birth in spite of assurances that their child’s birth injury was “unavoidable?”

Taking on Goliath

I remember having a conversation with a family member several months after our daughter was born. My daughter suffered a severe neurological injury at birth due to “complications of unknown origins.” During this conversation with my cousin, he suggested that I should have my daughter’s birth investigated. He also suggested that if investigators found that my daughter’s injuries were “preventable,” that I should sue for damages. I reminded him that he was suggesting I take on Goliath! I would not be suing a small, home town hospital. I would be suing one of the largest entities in the free world! I laughed at his suggestion and asked him if he knew any really, really good lawyers who would take such a case! I dismissed his suggestion and our conversation.

Making the Call

Fast forward almost 3 years. While watching television one afternoon, a commercial came on.  It was a malpractice law firm with an advertisement about cerebral palsy and birth injuries. I don’t know why, but I tuned in to that commercial, as voices from the past filtered through my mind. The conversation I had with the Attending Pediatrician the morning after my daughter’s birth was as clear in my mind at that moment as it had been that morning 3 years previous. The words “this was preventable” echoed through my mind. He had explained to me that, had the staff used a fetal heart monitor during my daughter’s delivery, they would’ve seen her distress and been able to physically stop the vaginal delivery and perform an emergency C-section, possibly preventing the severe birth injury she sustained.

As I copied down the 800 number, the doubts and inhibitions crept in. I remembered the conversation I had with my cousin and the disturbing reality of what I was contemplating started to set in. Did I really want to take on this fight? Would a lawyer even take our case? I didn’t know. I knew one thing though, we had nothing to lose! My daughter was severely brain injured and I wanted answers! It was already becoming evident, as early as 6 months of age, that my daughter’s brain injury was going to have a profound negative impact on her life. I wanted to know exactly what happened during those 40+ minutes that robbed my daughter of a normal life. I made that call.

Getting Answers

I had no knowledge of “statute of limitation” laws, but learned in my discussions with the lawyer that we were just 3 months away from the statute of limitations expiring. The resulting investigation by our lawyer provided the answers I needed. It was found that my daughter’s birth injury was the result of gross negligence on the part of the medical staff involved in her delivery. The negligence was such that our lawyer told us he was prepared to take our case to the Supreme Court if we had not won. As it turned out, we did win the case, and the ensuing settlement helped to provide a level of care and quality of life for our daughter that would not have been possible otherwise.

If your child was recently diagnosed with a neurological injury that you suspect occurred during their birth and you don’t have the answers you seek, MAKE THAT CALL. It may make the difference between you having to fight for services for your child their entire life, or being able to provide all the services and interventions they may need without government restraints or restrictions.

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Margaret Jones Conference on Cerebral Palsy Forum

Do you live in Southern California? Interested in trying out XBox technology for our CP kids? On Saturday, April 20, a family forum will be held at UCLA Santa Monica Medical Center where you will be able to play with this new technology. CP Family Network has been watching this project and provided support for the CP Research Foundation and UCLA to build this technology. Make your reservation soon so you don’t miss out on this great opportunity! 

http://www.cpfamilynetwork.org/blogs/margaret-jones-conference-on-cerebral-palsy-forum

Study Points To Treatment For Cerebral Palsy

By Shaun Heasley

April 16, 2013

A new technique being heralded as a breakthrough could have significant implications for the treatment of cerebral palsy.

Researchers say they’ve found a way to transform ordinary skin cells into brain cells that are missing or damaged in individuals with cerebral palsy and related disorders like multiple sclerosis. In such conditions, so-called myelinating cells — which help the brain send instructions to the rest of the body — cannot naturally be replaced.

In a study published Sunday in the journal Nature Biotechnology, scientists say they have successfully used the technique to alter cells from mice and are now looking to test it on human cells.

The approach dubbed “cellular reprogramming” is particularly promising, researchers say, because it relies on fibroblasts, a type of cell found in skin and many organs, that is abundantly available.

“We are taking a readily accessible and abundant cell and completely switching its identity to become a highly valuable cell for therapy,” said Paul Tesar, assistant professor of genetics and genome sciences at Case Western Reserve School of Medicine and a senior author of the study.