Cerebral Palsy Awareness Day

Today is Cerebral Palsy Awareness Day. To me this is a day to spread awareness, love, and hope. Today is a day to take a stand for the prevention, treatment and cure of Cerebral Palsy. I know that most people don’t know what cerebral palsy really is. Heck, I didn’t really know until Mattie was diagnosed with PVL.

Mattie has been diagnosed as having moderate spastic diplegia cerebral palsy. Broken down this means that Mattie has brain damage that affects the way her brain controls the muscles of her body (cerebral palsy). Mattie’s legs have a tendency to be tight and stiff, which limits her movements. She has no balance. Her arms and hands are slightly affected (spastic diplegia). Using the GMFCS scale, Mattie is a Level 3.

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What does this mean to me, us, her…
At almost four years old, Mattie still can’t stand without support or walk but she is a bad ass frog hopper! Her smile is infectious and when she tells me she loves me, my heart melts a little. She works hard everyday learning and becoming more in touch with her body. This is one tough girl. I know our perseverance will rub off on her. We are teaching each other to be kind, compassionate, strong, courageous, ambitious, and hopeful. We take things one day at a time, one milestone at a time, however slow they may come. We are learning and growing as a family with love and a little girl leading our way.

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So… take a moment to read a little about Cerebral Palsy:

  • Cerebral Palsy is the name given to a condition which affects the way the brain controls the muscles of the body.
  • Cerebral Palsy is the most common physical disability in childhood. It is estimated 10,000 babies born in the US each year will develop Cerebral Palsy and that 764,000 children and adults in the United States have one or more of the symptoms of CP.
  • Cerebral Palsy has different causes, and affects each person differently.
  • Many causes of cerebral palsy are still not known or understood. Injury or changes to the developing brain are associated with Cerebral Palsy.
  • The condition is not hereditary and there is no cure.

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There is no specific federal money for cerebral palsy set aside at the CDC or NIH. There is no true standard of care for those with CP. There are a handful of CP leaders and active advocates who are working hard to help propel the CP community ahead. So on this day of Cerebral Palsy Awareness, please consider taking a stand with Mattie and help our community by donating to fund desperately needed research. Some US based cerebral palsy organizations that are funding research and leading national advocacy efforts for the CP community are:

LetsCureCPReaching for the Stars. A Cerebral Palsy Foundation,  Cerebral Palsy International Research Foundation

Let’s acknowledge this day by taking action for the 17 million people across the world that have Cerebral Palsy. Please and Thank you!

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World Cerebral Palsy Day

Today is World Cerebral Palsy Day, a day that’s all about ideas that will change the world for people with cerebral palsy.

“Last year’s winners include a designer walker and a spill-proof cup. I have an idea—but the thing is, it already exists. The concept: More research for cerebral palsy. Some 17 million people across the world have cerebral palsy, and an estimated 350 million are closely connected to a child with CP. It is the most common childhood physical disability—and yet, there’s been a severe lack of federal funding for research into treatment and prevention.” – Ellen Seidman

So your asking what can I do on this day?

If you have an idea to change the world for people with cerebral palsy go to: http://en.worldcpday.org/

Or

Help fund the desperate need for research. Our US based cerebral palsy organizations that are funding research and leading national advocacy efforts for the CP community are:

LetsCureCPReaching for the Stars. A Cerebral Palsy Foundation,  Cerebral Palsy International Research Foundation

Or

Make a direct impact on Mattie’s life and help fund a trip to NY so she can get new leg braces by making a donation HERE.

Lets take advantage of this national recognized day and do something for the 17 million people across the world who have Cerebral Palsy. Please and Thank you!

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Sponsor-A-Therapy Week: Day 4 & Day 5

Day 4:

So, I am super behind in posting this… like a week. I just can’t get caught up on life sometimes 🙂

Tuesday is our “EI” day (early interventionist). During the hour she comes to our house, she works on Mattie’s cognitive skills, fine motor skills, speech, and just about everything else. Some things Mattie is working on are stacking blocks, matching, sorting, and pretend play. Sounds fun!!

Mattie’s EI recently helped us learn that Mattie has a hard time thinking “backwards”. What I mean by this is if you ask Mattie what noise does a cow make, she will reply “moo”. If you ask her what animal goes moo, she looks at you as though you lost your mind 😉 (even though she can say cow and point to a cow). I find this interesting that she can’t process this the other way. There are a few more examples that have the same result. So we are re-training ourselves to start asking things a different way… ahhh variation (an ABM principal).

We have been going back through some of the HELP milestones to assess what Mattie needs work on. Although I briefly went through it, I realized that Mattie is not as behind as I thought she was as far as cognitive skills. Gross motor… well, I did not even go there 😉

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Most days Mattie does music therapy. She spends time relaxing, looking at books, and even playing while listening to therapeutic music. Therapeutic Listening is an evidence-based auditory intervention intended to support individuals who experience challenges with sensory processing dysfunction, listening, attention, and communication. Since starting music therapy and speech therapy, Mattie has made tremendous gains in her speech. We are very happy with how she is talking these days!

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Day 5:

Wednesday’s are hippotherapy (horse riding). Mattie has really come to love riding on the horses and since her surgery, she is sitting up really well on the horse.

Equine movement provides multidimensional movement The horse provides a dynamic base of support, making it an excellent tool for increasing trunk strength and control, balance, building overall postural strength and endurance, addressing weight bearing, and motor planning. The horse’s walk provides sensory input through movement. The horses’ movement is similar to human movement patterns of the pelvis while walking.

Mattie goes to Quantum Leap Farm. For more info on hippotherapy, check out Quantum Leap’s website.

We would like to thank The Goodwin Family and The Kryk Family for sponsoring Mattie’s hippotherapy this week!

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If you are interested in sponsoring a therapy for Mattie, please click the link below. We will be doing another Sponsor-A-Therapy week in January!

As always, thank you for your continued support, love, and hope.

Sponsor-A-Therapy Week – Day 2 & Day 3

Day 2:

Sunday was our last day in Gainesville. Mattie completed another 2 ABM sessions. Sunday’s ABM sessions were sponsored by two of my best friends, Roxanne Anderson and Mindy Bennett!! Mattie was pretty tired after our weekend, as you can see 🙂

Tired

If you are interested in learning more about ABM, here is a great video highlighting the ABM journey of Cypress, a boy with Cerebral Palsy.

Day 3:

Monday’s are always a busy day for Mattie. She has speech at 9am and then takes a Gymboree class. Today’s speech therapy was sponsored by Donna Ottmer. Thanks Donna!!!!

Since starting speech therapy 5 months ago, Mattie has had dramatic speech improvement. She has recently been saying 3 word sentences and her vocabulary has really expanded. Here are some my favorite quotes from her: “Where Joba go”, “Mattie farted”, “How you doin?”, “Jimi Cat come”,

We recently had a meeting with our early invention program and they approved speech therapy for Mattie. This means that the state will pick up the bill each week (until she is 3) moving forward!! Pretty cool!!

Here are some pics of Mattie at speech therapy and Gymboree class!

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I was not planning on adding a video but tonight Mattie was counting her “22 toes” it is pretty cute so I had to post 😉

If you are interested in sponsoring a therapy for Mattie, please click the link below. We will be doing another Sponsor-A-Therapy week in January!

As always, thank you for your continued support, love, and hope.

World Prematurity Day

Today is World Prematurity Day. I keep seeing picture after picture of so many amazing kids who beat the odds. It is pretty cool to see 🙂 Mattie was 9 weeks early, born at 31 weeks. With only a 23 days stay in the NICU, we were hopeful.

Here is a pic of Jim holding Mattie’s hand when she was 4 days old.

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In honor of World Prematurity Day, March of Dimes is offering two kangaroo plush beanies for just $20, including shipping. From their website: “We’ll send you one to keep and we’ll send the second to a family in a newborn intensive care unit (NICU). By sending a beanie, you help spread the word about the important health benefits of kangaroo care. You also bring a little bit of comfort to a family during a difficult time.”

As I look back and remember those difficult days, I remember when those little acts of kindness made the world to me. If you would like to read about the day Mattie was born CLICK HERE. The 9 weeks that followed with her in the NICU, coming home, and then back to the hospital with pneumonia follows.

Tonight my thoughts and prayers are for all the babies, moms, and dads who are currently going through this. Sending love your way. XOXOXO

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The Hope for Mattie Charity Golf Tournament was an amazing success! We raised over $6,500 for Mattie. Every penny raised will go to fund her therapies. We owe a HUGE thank you to all those that participated, volunteered sponsored and donated. We are forever grateful for your generosity. Mattie’s success is a direct reflection of your support. Thanks for being on her team!

The pics from the event are posted here: https://hopeformattie.shutterfly.com/

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We hope to see everyone back next year!

Now for an update 🙂

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I asked Jim how he was holding up last night and he just looked at me and grunted, which was probably the most appropriate response if someone asked me the same thing. It has been a crazy few weeks.

In 16 days we accomplished: running a 100 person golf tournament fundraiser for Mattie, a 3 day trip to Texas for surgery, a 4 day trip to NYC for therapy, followed by moving the day after we got home from NYC. It has been pretty stressful. We have managed not to kill each other…yet. We said goodbye to our old house with a late night jump in the pool. It brought back many great memories. I will miss that house but we must move on. So here is an update from the past few weeks.

Our whirlwind trip to Texas for Mattie’s surgery went well. The day before surgery we met the surgeon and discussed everything in detail. He wanted to release Mattie’s lower legs which had not been the plan. He thought her ankles were very tight. Mattie’s foot doctor in NY, just 5 weeks prior, said that Mattie had the most flexibility in her ankles he had ever seen in a kid with CP with no surgery. Surgery on her lower legs would mean Mattie in casts for 4 weeks! I was seriously not prepared for this and had to hold back tears toward the end of the appointment. As we walked out of his office, I had tears coming down. How can 2 doctor’s opinions be so different in just 5 weeks? Could Mattie’s ankles become that much tighter in that short of time? The surgeon had me feel her ankles and he was right, but Mattie’s tone/tightness can fluctuate sometimes… How will we handle Mattie in casts? How will Mattie do in casts? I am not good with sudden changes of plans, so I felt overwhelmed and confused. I called Jim from the car and he told me to call Dr. Jordan in NY. I didn’t want to bother the doctor and I knew his office was just about to close, but I called anyway. Dr. J spoke to me for almost an hour. His kind, slow demeanor really helped me to understand a little more about the surgery. He reassured me that Dr. Yngve was fantastic and that if Mattie had tone that day in her ankles she might not the next day and Dr. Y would see that and adjust accordingly. Dr. J also said that we could use Mattie’s AFO braces that he had made in August instead of casts. Also, Dr. Jordan was going to call Dr. Yngve as soon as I got off the phone to discuss Mattie. Yes!!! Man I love Dr. Jordan, he is truly amazing! I was feeling much better about this change in plan. That night I took my mom and Mattie to my favorite Texas steakhouse 🙂

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The next morning we had to be at the hospital at 11am. Mattie went into surgery around 12:35. Surgery was to take around 1 – 1 ½ hours. At 1:37 Dr. Yngve came out to tell us that Mattie did really well and he was able to use her AFO’s instead of casts. Yea!!!!!! Now the wait to go back to see Mattie started. We could not go back to see her until she woke up. After an hour I was getting panicked. I had my mom go check in with the nurses and within 10 minutes I was finally able to go back and see her. She looked good. She had on huge knee immobilizers so I could not see where any of the incisions were. 20 minutes later we were upstairs in her room and discharge would be in an hour. Before Surgery

Once we got back to the hotel Mattie kept saying that she wanted to play on the floor. Talk about a quick recovery! The next day we flew home. Here is Mattie taking up the entire queen bed with those knee immobilizers!! Bed Hog

Mattie had 5 days home to recover from surgery before heading to NYC for 8 ABM sessions. I had 5 days to catch up on work and pack my house! Mattie is wearing her AFO’s 24 hours a day and using the knee immobilizers at night while she sleeps. We were concerned that Mattie had lost some of her abilities since surgery. She could not get into a W sit nor was she crawling, but she was able to long sit for the first time. 20131025-124719.jpg

I was not too concerned as another mom I spoke with had the same things happen. I think Mattie had been using her tightness to move then suddenly she has all this flexibility and range. She was not sure how to move anymore. It was a little upsetting to see her get frustrated and just lay on the floor but I had faith that she would figure out new and better ways to move. This is why ABM sessions were important to have done right away. So off we go. This time it is my Mother-in-law (aka Grandma), Mattie, and I taking on NYC with 4 suitcases, 3 carry-ons, a cooler, car seat, and stroller. I am sure we were a sight to see! I wish I had a picture 🙂

Hello NYC!

UWS how I have missed you. (for you non-new Yorkers – UWS – Upper West Side). I fall in love with this area more and more. Day 1 we squeeze in 2 ABM sessions and dinner with my good friend from Long Island. We take Mattie with us. Mattie can’t sit in a restaurant high chair (not a high enough back) so we cart a portable high chair around everywhere we go. This time I leave it back because the other day after surgery Mattie was sitting up really good in a shopping cart, not even using the back, so I wanted to give the restaurant high chair a try. I put her in it and WOW! She can sit up with no issues. With her legs more relaxed, she can sit more on her butt. It was so fantastic to see!! Good bye carting around a portable high chair!!!

Day 2: ABM in the am and pm. Mattie is doing well but Marcy says her back is very tight. We take off her AFO braces during the sessions and Mattie is able to move a bit better. She is not used to wearing them so I feel like it really restricts her movements. Mattie is still having trouble with her right leg. It does not seem to be as loose as the left leg. After ABM, Mattie and I take a walk to Central Park and stop by the playground but it is swamped with kids… maybe tomorrow.

Leaving Marcy's

Day 3: Mattie is getting better movement and has been able to get into a side sit. Her back is releasing a little, and she is able to stand up a bit taller then she had been after surgery. After ABM Mattie and I take another walk up to Central Park, this time we take another route and go by the Museum of Natural History. Along the way I see a ton of people on benches eating…. Shake Shack. Hmmm what is this Shake Shack?? Why are like 20 different people eating it?? I must go check it out! We turn around and wait in a ridiculously long line, $10 later I am eating the best cheeseburger EVER (it has been a long time since fast food cheeseburgers) and Mattie and I are sharing some fries, on a park beach, in the middle of New York City…. Ahhh this is the life… granted it is only 3:30pm, and I am not sure why so many people are randomly eating Shake Shack at 3pm, but somehow it feels like the right thing to do 🙂

That night I take Mattie and Grandma to Rosa Mexicana. We go early as to not annoy everyone that we are bringing a 2 year old to a nice restaurant. Mattie does fabulously, as always, and I get my guac fix 🙂

Day 4: 2 more early ABM sessions before taking a cab to catch a 4pm flight home. Mattie did not nap between them so I was worried that the last session was going to be a waste. Mattie was super tired and almost burned out. This ended up being her best sessions so far! Mattie was able to get into a W sit! Marcy went over some stuff to work on at home and we said our goodbyes. Until next time UWS… See you when it gets warmer!

Overall the trip to NYC was exactly what Mattie needed. She is moving better since we have been back home. She feels better in my arms and her back is looser. She is W sitting again and is crawling army style. I think once she feels a bit more comfortable in the W sit we may see her frog-hop-crawl move again or even better, a real 4 legged crawl. She is able to long sit and side sit, which she has never done before. She is standing up really well compared to the first few days after surgery.

Side Sit

Hi!

We go back to Gainesville for ABM sessions in a few weeks. This will give Mattie some time to integrate what she learned in NYC. Today at hippotherapy, Mattie sat up on her horse for the first time with a straight back. Check it out! Yes… I cried.

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This surgery is going to open up a ton of new possibilities for Mattie. I can’t wait to see what the next few months bring. Thank you again for everyone who sent us good thoughts, prayers, and love. Everyday hold the possibility of a miracle!

Rolling Along

When Jess told me that she had signed us up for a wheelchair fitting, my first reaction was to resist. I thought up several excuses in my head why Mattie didn’t need one. She was too little-she won’t know what to do with it-we will use it as nothing more than a glorified (expensive) stroller. Then I started to think about what it meant. People would know something was wrong with her. More importantly, I could no longer deny that something was wrong with my daughter. It would be a monstrosity – a constant reminder of the difficulties we had faced and the hurdles that lie ahead. However, the fact remained that it was getting more and more difficult to transport Mattie as she continued to grow. Her inability to move on her own was also keeping her from interacting with other kids. It hurts my heart to see her lying on the ground, stuck watching her cousins and her brother run around, squealing and jumping and playing, knowing that she has no way of participating. Jess and I talked about all of this, and I reluctantly agreed to look into buying her a wheelchair.

The day of the fitting, I left work with my head full of negative thoughts and expectations. When I got home, I walked in to find Mattie sitting in a wheelchair wearing the biggest smile on her face! She was happy. Just as important, she was using it correctly-all by herself! She whizzed back and forth until she rammed into a wall or a cabinet. We would then turn her around, only to watch her take off again. It was as if she knew what she was doing. She loved it! Seeing her so happy was a shock and I immediately realized that I had thought about this all wrong. I stopped worrying about what a wheelchair meant and started thinking about all of the things Mattie would be able to do with it. She could play outside. She could play with others. She could chase her brother!

As I sit here now, I can’t wait for the wheelchair to arrive. I’m excited to have it specifically fitted to Mattie and see what she can do! This could really be a good thing for her….Sometimes a little perspective goes a long way. Check out her video from the wheelchair fitting:

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A diagnosis is not a prognosis

A diagnosis is not a prognosis. I can’t tell you how many times I have repeated this 6 word sentence. Mattie’s Neonatologist told us this when we were called into his office the day we learned Mattie had PVL (brain damage).

As Mattie grew and failed to meet milestone after milestone, I would almost chant these words in my head each time I saw her struggle to do things that she “should” be able to do. I have always believed that with hard work and perserverence anything is possible. I started to doubt these words I lived by.

How can Mattie sit, stand, or walk if her brain does not know how to tell her body to do it? Each time Mattie struggles to sit up or buckles to her knees when stood up is a consistent reminder of her diagnosis. Wait – a diagnosis is not a prognosis. So we push on. Mattie pushes on.

Then something incredible happens, Mattie accomplishes a new milestone! I think to myself, a diagnosis IS NOT a prognosis and with hard work and perserverence anything IS possible!

Until… the next time I start to have doubts and then this ridiculous cycle starts over again. But today is the day. The day that I promise myself and her that I will no longer question or doubt our decisions as far as what therapies we do, how often we do them, or wondering if we are doing enough, because I can only do what feels right to me and what feels right to Mattie. Progress is progress no matter how we get there or in what time frame we get there.

Mattie continues to prove to me that I was right; with hard work and perserverence anything IS possible! Check it out for yourself. Mattie has learned to sit up on her own!

Mattie Sits

Run for Hope

To check out pictures from the 1st Annual Run for Hope 5K – Click Here!

I will admit that the few days leading up to race day, I was nervous, stressed, and driving everyone crazy, namely Jim. I had been up till 1am for almost 6 days straight working on the details and getting everything ready, but the lack of sleep was starting to effect me. Yet on race morning, I woke up feeling energized and ready to run myself 🙂 I was excited to see how the day would turn out.

We had 140 registered 5k runners going into Saturday and not really sure how many more people would come and register the day of. We also had 36 1-milers registered. We surpassed our goal of 125 so I was excited.

Mattie was the star of the day getting her photograph taken with the runners and meeting all the amazing people who came out to run in her race. The morning went by so fast. Before I knew it, the awards were given out and we were cleaning up. The feed back we received was great. We also had some great advice given to us for next year’s race.

Here are our final numbers:
168 – 5K Registered
49 – 1 Milers Registered

We were able to raise a total of $5,160, over $2,500 more than our goal. You can’t even imagine just how blessed we feel. It looks like we will be heading back to California sooner than we thought! With the results we are seeing everyday with Mattie, I just know that even more progress can be made with another trip on the horizon.

We owe a huge thank you to Mindy and Jennifer for coming up with the idea and moving forward with it. If it was not for the two of you, this day would have never happened. To everyone who sponsored, volunteered, ran, walked, supported, donated and just sent good thoughts our way…thank you for supporting our family. YOU are the reason for Mattie’s progress and we will forever be grateful.

With love and hope,
JJJM

HFMC

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Run for Hope Sponsors

What exactly is cerebral palsy? How does this effect Mattie?

Today is World Cerebral Palsy Day, the first one of its kind. To me this is a day to spread awareness, love, and hope. I know that most people don’t know what cerebral palsy really is. Heck, I didn’t really know until Mattie was diagnosed with PVL.

Mattie has been diagnosed as having moderate spastic diplegia cerebral palsy. Broken down this means that Mattie has brain damage that affects the way her brain controls the muscles of her body (cerebral palsy). Mattie’s legs have a tendency to be tight and stiff, which can limit movement. Her arms and hands are normally loose but the range of motion in her arms are limited (spastic diplegia).

What does this mean to me, us, her…
Mattie still can’t sit up, crawl or walk (she is 1 yr 5 mo old), but she is a bad ass roller! Her smile is infectious and when she blows me a kiss my heart melts a little. She works hard everyday learning and becoming more in touch with her body. This girl is one tough girl. I know our perseverance will rub off on her. We teach each other to be kind, compassionate, strong, courageous, ambitious, and hopeful. We take things one day at a time, one milestone at a time. We are learning and growing as a family with love and a little girl leading our way.

So… take a moment to read a little about CP

What is Cerebral Palsy?
Cerebral Palsy is the name given to a condition which affects the way the brain controls the muscles of the body. This results in difficulties in movement and posture. Cerebral Palsy has different causes, and affects each person differently.

What causes Cerebral Palsy?
Cerebral Palsy is the most common physical disability in childhood. It is estimated 10,000 babies born in the US each year will develop Cerebral Palsy and that 764,000 children and adults in the United States have one or more of the symptoms of cp. The condition is not hereditary and there is no cure. Many causes of cerebral palsy are still not known or understood. Injury or changes to the developing brain are associated with Cerebral Palsy.

Is Cerebral Palsy curable?
There is no cure for the developmental brain damage that causes Cerebral Palsy. Therapy, however, can help improve muscle function and coordination. Studies have found that children who receive early therapy are more likely to lead a more typical and improved quality of life. Recent advancements in neurological studies have vastly expanded knowledge of brain plasticity (the brain’s natural ability to form new connections in order to compensate for injury). Scientists have learned that the brain continues to reorganize itself by forming new neural connections throughout life.

Common Characteristics and Types:
– Persistence of primitive reflexes
– Involuntary movement
– Disturbance in gait and mobility
– Muscle tightness or spasticity
– Impairment of sight, hearing, or speech
– Seizures
– Difficulty in swallowing, feeding and problems with speech
– Learning and intellectual disabilities
– Abnormal sensation and perception

Cerebral Palsy can be grouped into three main types.
Spastic CP is the most common type of CP. Spastic muscles are tight and stiff, which limit movement. Spasticity may be very mild and affect only a few movements, or very severe and affect the whole body.
Athetoid is characterized by tremors, unsteadiness, lack of coordination, and constant movement. About 10% of children with cerebral palsy have this type.
Ataxic CP is the least common form of cerebral palsy. Ataxia means having a lack of balance. They usually have low muscle tone, a staggering walk and unsteady hands.

Specific words are used to describe the parts of the individual’s body that are affected.
Diplegia: Both legs and both arms are affected, but the legs are significantly more affected than the arms.
Hemiplegia: The leg and arm on one side of the body are affected.
Quadriplegia: Both arms and legs are affected. The muscles of the trunk, face and mouth can also be affected.

(source: United Cerebral Palsy: http://www.ucp.org/)

World Cerebral Palsy Day, on September 4, 2012, is the world’ first! It will change the lives of people with cerebral palsy (CP). The theme for this unique day is ‘Change my world in 1 minute’. There are 17 million people around the world with cerebral palsy. A further 350 million people are closely connected to a child or adult with CP.
This website is a forum for people with cerebral palsy to express what they need to make their life more independent or more rewarding. The website also gives people with CP the opportunity to make these ideas a reality.”
Please go check it out here: World CP Day

Mattie and Joba taking part in Hope for Mattie’s World CP Day fundraiser!