Urge Congress to Fund Cerebral Palsy Research

Cerebral palsy affects more children than muscular dystrophy, multiple sclerosis, cystic fibrosis or childhood leukemia. But CP receives only a fraction of the government research funding these other disorders receive. I wish I knew why. I only know it isn’t right.

Not that these organizations deserve any less research support. I just believe cerebral palsy should warrant more attention. In the U.S., 1 in every 303 eight-year-olds has cerebral palsy. The odds are 1 in every 270 among African-American children. Yet, the cause of 80% of CP is still unknown.

I work with families of children with cerebral palsy on a regular basis. I know what kind of challenges they face, and what it costs to provide children with the kinds of therapies and services they will need the rest of their lives. I present these numbers in courts and around settlement tables. I am well aware that science has not found a way to prevent most cerebral palsy, or to cure it.

Without more research funding, it is unlikely this will occur anytime soon, which is a travesty. Dedicated research funding is practically nonexistent, according to the Academy for Cerebral Palsy and Developmental Medicine. The Centers for Disease Control and Prevention (CDC) has no specific funding for CP, and funds dedicated for CP by the National Institutes of Health (NIH) (only $22million for this year) is not for innovative, curative research, the academy notes.

Today is National Cerebral Palsy Awareness Day. Do your part to urge Congress to dedicate more funding to preventing, curing and developing effective therapies for cerebral palsy. Contact your elected officials. The 800,000 Americans who are living with CP today are counting on you.

For more information about the causes of cerebral palsy, read my blog “Your Child’s Cerebral Palsy: Preventable Mistake or Not?“

Musician With Cerebral Palsy Advocates Against Bullying

Check out how this awesome musician with cerebral palsy stands up for kids who have been bullied. Read more about his music and passion for those with cerebral palsy in our latest "In the News" article. 

http://www.cpfamilynetwork.org/in-the-news/musician-with-cerebral-palsy-advocates-against-bullying

Finding Justice for Bailey

By Terresa Gaither

Mothers’ Day will always be a mixture of joy and sorrow for me. My son, Bailey, was born on this day, May 9, 1999, and I’ve been blessed by his existence every day for 13 years.
It was also the holiday that my doctors and nurses delayed too long in delivering Bailey, resulting in brain damage.
For a long time I blamed myself and God. I kept asking, “Why me?” Then, a very special person in my life told me that God gives special babies to special people. I feel honored to be the mother of a child with disabilities.
I ended up filing a lawsuit over Bailey’s birth. According to my suit, my doctor and nurses were negligent in continuing to give me larger and larger doses of Pitocin (a drug to induce labor), even though Bailey was showing signs of fetal distress. As a result, Bailey suffered “severe and permanent neurological damage,” by the time he was born, my lawsuit notes.
The doctor used a vacuum extractor to deliver Bailey, who weighed 8 pounds 15 ounces and was 21 inches long. I suffered major blood loss and third degree vaginal tears, which required surgical repairs, my suit documents.
According to my attorneys, the doctor should have come to the hospital sooner and delivered Bailey by C-section.

Normal Pregnancy Turns into Nightmare

Bailey was immediately transferred to the NICU at another hospital nearly 60 miles away. I remember before he left, getting to see him for 5 minutes, long enough to tell him I loved him. I wasn’t even able to touch him. You can’t imagine how hard it is to lay in a hospital bed while your son is in another hospital over an hour away fighting for his life.

Specialist Raises Questions About the Birth

Since that day, my husband, David, and I have had to fight for Bailey, who has mixed spastic dynostic cerebral palsy. He cannot speak, walk, sit up or feed himself.
The diagnosis took a year and a half and came from a specialist at a larger hospital near our small town in Alabama. He looked through Bailey’s medical records and, after telling us Bailey would always need specialized care, asked us if we had thought about getting an attorney.
We discussed his question all the way home and we made a decision together to start pulling Bailey’s medical records. It took me three months just to get the records from the hospital and the medical practice.

Persistence Leads to Janet, Jenner & Suggs

The first law firm we contacted kept our files for two years before saying they weren’t equipped to handle the case and that there wasn’t any negligence. The second law firm concluded the case was too big for them to handle, but advised us to keep pursuing legal action.  
At this time, we felt like giving up. It was my mom who wouldn’t let us, encouraging us to push forward.
While researching a special education class for Bailey on the Web, an advertisement for Janet Jenner and Suggs’ law firm caught my eye. I filled out the short contact form and within two weeks, a nurse called and asked me detailed questions. The firm took the case.
Because of a confidentiality agreement, I can’t disclose what happened with the case. But, I can tell you it was a long, drawn out process. But JJ&S attorneys kept us in the loop and assured us every step of the way.
Ken Suggs wasn’t just our attorney, he became our friend. We could tell he really cared about Bailey and we feel honored to have this remarkable attorney in our son’s corner. He’s the kind of attorney who is passionate about speaking for the kids who can’t speak for themselves.
About our case, Ken said, “It was obvious from looking at the medical records that standards of care weren’t followed. Typical of these cases, it wasn’t a single mistake, but a series of missteps and miscommunications that led to the outcome. The firm connected the dots, using the medical and legal expertise it is known for. Bailey and his family have a special place in my life, and always will.”

Bailey is the Joy of Our Lives

Bailey loves to go to school, play outside and spend summers on the lake. But what he enjoys the most is spending time with his brother, Cody, and his grandpa, Wes. He’s just a regular boy trapped in a body that doesn’t allow him to do the things he wants.
No matter what kind of a day we’ve had, Bailey can always make it better just by smiling. He is the joy of our lives.

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

Disabled Voters Face New Hurdles at Polls

With the voting season kicking into high gear, it's time America addressed the disabled population's needs. That our voting technology hasn't improved enough to let the handicapped have the same accessible voting stations as those without disabilities is almost criminal. Does your county or state make special considerations to allow you to vote? If not what do you suggest should be done?

http://www.cpfamilynetwork.org/uncategorized/disabled-voters-face-new-hurdles-at-polls

A Letter to My 10-Year-Old Self

By Chris Windley
Writing for CP Family Network

Chris Windley is well-acquainted with the challenges facing children with cerebral palsy. As a child growing up with a disability, he experienced bullying, feelings of isolation and self-doubt. Now a thriving 27-year-old, Chris reflects back on his life and shares touching words of wisdom with his 10-year-old self.

Dear 10-year-old Chris,

Hi. I’m you 17 years from now. You’re in college, loved by a wonderfully awesome girlfriend, and have your very own dog! Things are going really well for me (us?) right now, and I decided to write you since I know you’ve been feeling frustrated and confused that you have cerebral palsy on your left side, and you want and need answers. I’ll do my best to help answer some of your concerns now; so here goes:

Pursue hobbies that interest you, whether or not anyone believes you can or can’t do them. Our ability to “turn a wheelchair into lemonade,” as Zach Anner puts it so well, and the ability to overcome obstacles are two of our greatest strengths. Follow your heart and stay active! When things get hard, more often than not, doing those two things will help keep you happy, healthy, humble, honest and point you in the right direction.

Be patient. I know it’s hard to deal with the staring, mean words and bullying, but things will get better! Those people being mean or treating you poorly just have different lessons than you that they need to learn. Life isn’t just unfair for us, it’s unfair to everyone at some point or another. Strive to be prepared. Never forget this, as it’ll also help you remain happy, healthy, humble and honest! We all have our own paths, challenges, successes and failures. Focusing on one being better or worse than the other is time better spent laughing with or helping one another.

Never lose faith in anyone, especially yourself. You and those you trust are your greatest defenses when you need to keep anything negative away from you, and are the key to allowing how awesome you are within to continue to shine. When times get tough, you can always find comfort and strength in yourself, your friends and your family! People are going to say and do things that will hurt. When that happens, it’s usually because they feel down or unhappy themselves. They don’t know how else to deal with their own faults or mistakes, so they take those feelings out on someone else. Try not to take it to heart. Remember, you can’t control others, but you can control how you respond to what others say and do. I guess what I’m basically trying to say is this: Don’t let anyone change who you are or how you feel about yourself, unless YOU think the change is right or good for YOU.

Don’t be afraid or embarrassed to ask for something or express yourself. There are exceptions, times when keeping your thoughts, feelings, or needs to yourself is the right or best thing to do; but generally, no one else’s thoughts, feelings or needs matterany more or less than your own. Trust yourself. I’m not going to tell you it’ll always be easy, but you can handle any and everything that may be thrown your way (I’m proof of that!). Deep down in your heart of hearts, I know you know this is true.

You are NEVER alone. Even though you may not always be aware of it, a lot of children are also going through a lot of the things you are going through. Don’t worry though; there are TONS of people who are dedicated to making things more accessible and better for you, me, and everyone else with a physical or mental disability each and every day. And we are all cheering you on!

Sincerely,
27 year old Chris
08.06.12

PS: Keep up the good work and stare at the TV a little less. You’ll get glasses soon. We both know you look pretty funny until you get contacts, when you’re 17! You eventually start beating Mom, Dad and Mike at Scrabble. You get so good that Dad and Mike won’t even play you!

Chin up, smile wide, laugh often, and “Foot down, Buckaroo!” I know how much you hate hearing that, but now that I’m older, I understand why Mom and Dad get a kick out of saying it! Trust me, they still say it, so don’t waste your time trying to convince them not to. It doesn’t work! And whatever you do, continue to improve your writing skills. They come in handy too many times to count later on!

About the Author

Chris Windley lives in West Virginia. He is currently pursuing a Bachelor’s Degree in Psychology with a focus on people with physical and mental disabilities. His dream is to start and operate a charity designed to help people through hard times or to get back on their feet. If you’d like to write for the CP Family Network, please send a message to cpfamilyblog@gmail.com

Electrical Stimulation Restores Mobility to Young Boy with Cerebral Palsy

August 13th, 2012
From CBS DFW 

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11 year old Matthew Hurt isn’t just walking better these days.  The North Texas boy’s running, jumping and riding have improved as well, all thanks to a device the size of an iPod.

Shortly after a premature birth, doctors diagnosed Matthew with mild cerebral palsy.  He’s developed cognitively like any other child his age, but the cerebral palsy resulted in weakness on his right side.  That led to a condition known as “foot drop” which causes a person to drag the toe of the shoe on the ground or slap the foot on the floor.

This caused Matthew to have an unnatural gait, and made it difficult for him to walk without tripping and falling.  And as a result, that made it hard to keep up with his friends.

However, doctors recently fit Matthew with a medical device.  It’s called the WalkAide.  The device is worn around the calf, just below the knee, and uses electrical stimulation to combat foot drop and restore mobility to people like Matthew.

Since wearing the WalkAide, Matthew’s gait has improved significantly. He can walk faster and farther before getting tired. He’s also able to keep up better with his friends when he’s on the golf course playing his favorite sport.

The WalkAide can also be used in patients living with traumatic brain injury, multiple sclerosis, stroke, and some spinal cord injuries.

Watch the video of Matthew here.

View original article

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Documentary on One Family Who Cares for 2 Daughters with Cerebral Palsy

We’re pleased to share with you this short documentary that was filmed, edited and produced by Steve Tatzmann, the founder of StaleFish Production Company.

The House of Gort is the story of a family with two special needs daughters (Cerebral Palsy) following a medical accident that would forever change their family dynamic.

This piece is lovingly dedicated to Steve’s father, Manfred Tatzmann, who has been an advocate for those with special needs and their families his entire life.

http://vimeo.com/46597387

We hope that once you’ve watched the film, you will feel compelled to “Support the Gorts” by sharing with as many people as you can or taking the time to leave comments here on our blog.

If you feel inclined, you may reach out to ask questions directly to the hospital via Facebook or by e-mailing them.

If you need any additional legal or medical resources please visit our website:

http://www.cpfamilynetwork.org

 

Toxic Baby Shampoo Report Stings Johnson & Johnson

By Elisha Hawk

The eyes of Johnson & Johnson executives must be stinging from today’s disclosure that its Baby Shampoo sold in the United States still contains a chemical that releases formaldehyde—a known carcinogen—even though the ingredient has been removed from shampoos sold in other countries.

A report issued by the Campaign for Safe Cosmetics, a coalition of some 50 non-profit health and safety groups, says its latest analysis of J & J’s Baby Shampoo shows the product sold in the U.S., Canada and China still contains quaternium-15, a chemical preservative that kills bacteria by releasing formaldehyde. Formaldehyde was recently added to the U.S. government list of known human carcinogens

The Campaign’s report triggered a statement from J&J that it is phasing out its products with formaldehyde-releasing chemicals in the U.S. and elsewhere. But according to the Campaign, the company already sells formaldehyde- free shampoo in Denmark, Finland, Japan, the Netherlands, Norway, South Africa, Sweden and the U.K.

“Clearly there is no need for Johnson & Johnson to expose babies to a known carcinogen when the company is already making safer alternatives. All babies deserve safer products,” said Lisa Archer, director of the Campaign for Safe Cosmetics at the Breast Cancer Fund.

We agree. Why the delay for U.S. babies? Is it profit? According to the Campaign, J & J’s “organic” brand of its baby Shampoo contains does not contain guaternuum-15 – but it costs twice as much.

I find it reprehensible that a corporation would so callously put infants and small children at risk to sell a little more shampoo. Johnson & Johnson’s reputation is on the line. It should immediately recall all its Baby Shampoo and any other products containing cancer-causing ingredients from around the world and replace them with safer alternatives.

Elisha is a attorney with Janet, Jenner & Suggs and focuses her practice on defective products liability and holding corporations responsible.