You are here: Home / Archives for cerebral palsy
post

The Ridiculous Cost of Special Bikes

December 29, 2011 By 4 Comments

My local news had a heartbreaking story of a boy with special needs who had his adaptive bicycle stolen the day after Christmas.  The boy’s family had saved up and gotten the bike for their son as a Christmas present and then some asshole steals it the very next day!  The story both broke my heart and pissed me off.

Then, in an amazing act of generosity, a local businessman stepped up and bought the family another new, $1300 bike for the boy who has Cerebral Palsy, Autism and other disabilities.

It seems that there are still good people in this world!

However, the entire story got me thinking (again) about the subject of “special needs bikes.”  My friend Cheryl wrote a post about it not long ago when she was looking for bikes for her daughter, Jillian.

We were looking through catalogs and chatting about it and I never understood WHY they cost so much money.

The boy in the news story above’s bike only cost $1300.00 but, a look through Adaptivemall.com and you can see that bikes made for these precious children can go as high as $4000.00 (FOUR THOUSAND BUCKS!).

I mean….WHY?

Because the seats are shaped different and they have a few extra nylon strap seat belts?  Because they have straps on the peddles to help steady the feet?  Perhaps it’s the extra brake?

I don’t think these are expensive adaptations.

Do you?

Why should a child with cerebral palsy or another physical disability be screwed out of the freedom of riding a shiny red bike?  I can go to WalMart and buy my kids a “regular” bike for $60.00.  Why does a few extra straps cost thousands more?

I’m so happy that this boy will still get his bike.  The generosity of strangers can still be an amazing thing.  While I try not to focus on the fact that the person who stole the bike is a douche, he is probably just another special needs parent who can’t afford to buy his own damn bike.

 

 

Filed Under: Current Events, Local San Diego Tagged With: ,
post

Results of Jillian’s Auction!

September 21, 2011 By 21 Comments

This past weekend we stood up to a crappy insurance company and took matters into our own hands.  This insurance company stood behind their cold desk and flat out said “no” to helping a little girl walk.  But, the good people of social media, friends and family stood up and told that insurance company to “shove it.”

I love when that happens!

If you have no idea what I’m talking about, you might want to first visit Cheryl’s Cerebral Palsy category to catch up.  Start down about “Defeated” and work your way up to get the big picture about what and why we are doing what we are doing.  Then you can read my post, Help Me Help Jillian, to see where I got a wild hair up my butt and decided to not sit idly by while the insurance company dictated my friends future.

Auction Results

With the help of our friends, we quickly organized a fund-raising auction.  Between bidding on items and just flat out donating money, we were able to raise $1189.00 USD.

Take that Manulife Financial!

I can NOT say THANK YOU enough!  To hear my friend’s smile in her voice and see her regain hope for her daughter was an absolute thrill for me.  To know that right at this very moment, Jillian is getting the Botox injections administered and that come tomorrow she’ll likely be up walking around pain free is magnificent.

Of course, wiring the money to her last night was an ordeal in itself, but I will save that story for another day!  Let’s just say I had no idea how complicated it would be to send that much money across international borders.  Oy!

Press Release (because we are awesome like that):

Bloggers Raise Money For Child’s Botox Treatment After Large Insurance Co Denies Claim

3 year old child with Cerebral Palsy needs Botox Injections to aid her ability to learn to walk.

09.17.2011– Toronto, Ont. September 17th 2011 – Social Media Users rally together to raise money for 3 Year Old Jillian’s Cerebral Palsy treatment after the insurance claim was denied by Manulife Financial. The insurance company denied coverage of the Botox Injections which would allow Jillian to learn to walk because they were being administered in The Hospital for Sick Kids and not a private clinic. Cheryl Peters, Jillian’s mother, fought with Manulife on the phone for months only to be told that it didn’t matter who she spoke to, or what letters she had from the medical team; the claim wouldn’t be covered. Many kids with Cerebral Palsy are approved for this treatment by different insurance companies throughout Canada. The treatment is given in hospital and not a clinic because sedation is used due to the number of needles required. “Asking a 3 year old sit through that procedure without sedation is barbaric,” says Cheryl.

Dr. Fehlings, Jillian’s doctor, wrote to Manulife, pleading “We are hopeful you will reconsider the coverage of Botox (Botulinum Toxin A) for Jillian as it has been shown to be efficacious for this young girl allowing her to walk, sit and play with her peers.”

Nobody at Manulife read the letter.

Cheryl turned to her blog for support. She wrote about her frustrations and her feelings of failure as a parent and her readers responded. Comments, tweets and facebook posts flooded in in support of Jillian and her plight. Blogger Rhea, of www.OhRheally.com organized an impromptu fundraiser and donations seemed to come from nowhere. In a matter of minutes there was cash and items for a fundraising auction coming in from social media users in Canada and the USA.

Now, thanks to funds raised by the bloggers, Jillian will keep her next appointment for Botox Injections (scheduled for Wednesday Sept 21st) and will regain the movement she is rapidly losing as her previous treatment wears off. She will no longer look to her mother and ask why her legs won’t work. On Wednesday, Jillian will be back on her feet and ready to fight again but for how long? What will happen when this round wears off and her family is left with an enormous bill for the next treatment?

To read Cheryl’s original blog post visit http://bit.ly/q9M6n8 To speak with her please email cheryldpeters@gmail.com. To donate cash or items for auction please email rhea@ohrheally.com For more information on Botox treatments for Cerebral Palsy please visit http://bit.ly/gHt3cw

Filed Under: Randomness Tagged With: , , ,
post

Get LIVE Updates From a Cerebral Palsy Symposium

May 12, 2011 By 2 Comments

Because my nephew has cerebral palsy, I am generally pretty aware of it in the world.  I keep up on treatment options and news regarding it.  But I’m not nearly in tune with it as much as my friend Cheryl is.  Her two and a half year old daughter is living with cerebral palsy and I learn so much from her every day.  Recently she signed on to be part of her rehabilitation hospital‘s Parental Advisory Board and tomorrow she will actually be LIVE blogging and tweeting from the Cell to Person Symposium!

She will be updated her Facebook page and Twitter feed with notes from the Symposium.  I’m really looking forward to following along and seeing what kinds of advancements are being made in stem cell research for cerebral palsy.  TUNE IN to see what amazing things are happening!

 

 

Filed Under: Current Events Tagged With: , ,
post

Cerebral Palsy Awareness Day 2011

March 20, 2011 By 9 Comments

Cerebral Palsy is a broad term used to describe a group of chronic movement or posture disorders. “Cerebral” refers to the brain, while “Palsy” refers to a physical disorder, such as a lack of muscle control. Cerebral Palsy is not caused by problems with the muscles or nerves, but rather with the brain’s ability to adequately control the body. Cerebral Palsy can be caused by injury during birth, although sometimes it is the result of later damage to the brain. Symptoms usually appear in the first few years of life and once they appear, they generally do not worsen over time.

More than half a million Americans have Cerebral Palsy, and an additional 4,500 infants and children are diagnosed yearly. Some of these cases may be preventable.  (Source: CerebralPalsy.Org)

Today is Cerebral Palsy Awareness Day.  My 13 year old nephew, Robert lives with cerebral palsy that was caused by an injury to his brain during his birth (lack of oxygen, delayed delivery).  I’ve spoken about him before, he’s a really neat kid!  This year, I asked my brother, Eric if he would guest post here to describe what it is like to have a child with cerebral palsy.  My brother is a single dad who works from home promoting local independent music.  You can find him writing most days at www.ultimatelocalmusic.com.

Click to Enlarge

I would anticipate that having a child with any kind of disability would be difficult. My son, has Cerebral Palsy; a severe case of it at that. At times, it can be very difficult but at the same time; it is very rewarding.

My son was the first child I had. I became a single father at a very young age; (23 years old I believe). In the beginning, taking care of him and all the things I do for him was the normal thing for me to do. When I had my second child, that’s when it really sank in all the things I do for my son.

My son is not mentally disabled by any means, in fact he is extremely smart and getting a 4.0 GPA in junior high school. My son is “physically” handicapped and cannot do the normal things that you would expect from a child that is not disabled. My son is 13 years old and drinks from a Sippy cup that you would give an infant just learning how to drink. He drinks out of this because there is a handle on each side of the cup that allows him to hold it himself. This is pretty much the ONLY thing he can give himself.

My 13 year old son cannot talk, cannot feed himself, and is still in diapers because he can’t tell us when he has to go to the bathroom. I take care of my son all by myself just as you would an infant child that was just born. Day in and day out, it is all on me to insure his survival. I sit there and feed him his breakfast, lunch, and dinner. Many times, I will wait to eat my dinner just so I can make sure he is taken care of and has a full belly. I change my sons diaper just as you would a baby; I have baby wipes on hand all the time.

If my son gets sick with the flu, my personal life pretty much ends. I have to constantly look out for him in case he throws up because he may choke on it. When we are sleeping, I have to sleep with him. If he starts to throw up in bed, I have to yank him up and try to get it in a bowl; you can say good bye to sleep.

My son cannot walk but at home he crawls around from room to room. When we go out in public or he goes to school, he is confined to a wheelchair. He has an electric chair that he controls with his head; a lot of the younger kids think he controls it with his “mind”. He also has a really neat communication board that allows him to talk. He types in what he wants to say, and it says it for him. He is really good at this. In fact, he is really good at anything that has to do with computers.

Although he is disabled, he is your typical 13 year old boy. He has two younger sisters and fights with them all the time. Sometimes when they walk by, he will stick his arm out to trip them. He has always been into law enforcement and right now he is infatuated with Billy The Kid. We are constantly looking up Billy The Kid stuff on line.

Life can be very difficult having a disabled child. I look at the other fathers playing catch with their kids, hiking, fishing, teaching them how to use a BB gun; and it can make me sad knowing I will never be able to do some of those things with my own son. But at the same time, my sons smile will brighten my day. He is so very loveable and caring. He always seems to know when I am sad and will do his best to give me a great big hug.

I admire my son greatly. Although he has everything in the world going against him, he is the happiest kid in the world. If I am having a bad day, I will often look to him for inspiration. It’s amazing how much I have learned in my years on this earth from a disabled 13 year old kid. He’s my very best friend as I am his; and I wouldn’t have it any other way.

I do have to give some credit though. Being a single father with a disabled son; I had and have a ton of help. If it weren’t from my mom and my sister; I don’t know where I would be right now.

Please head over to Cheryl’s blog because she has been featuring some amazing families all week that have been effected by Cerebral Palsy. 

Filed Under: Family Life Tagged With: ,
post

Cerebral Palsy Awareness Day

March 20, 2010 By 14 Comments

This is my nephew Robert.  He is 12 years old and attends the public middle school.  He likes anything and everything that has to do with the Police and I he watches the show “Cops” religiously.  My boys adore their cousin Robert and love to swim with him in the pool and get rides from him when he pulls the wagon for them.  Robert is a typical 12 year old and he fakes being sick to stay home from school, he has been sent to the principals office for cursing in class.

Robert also has Cerebral Palsy.

Cerebral palsy refers to a group of disorders that affect a person’s ability to move and to maintain balance and posture. It is due to a nonprogressive brain abnormality, which means that it does not get worse over time, though the exact symptoms can change over a person’s lifetime.

People with cerebral palsy have damage to the part of the brain that controls muscle tone. Muscle tone is the amount of resistance to movement in a muscle. It is what lets you keep your body in a certain posture or position. ~ CDC.gov

Today, March 20th is Cerebral Palsy Awareness Day.

I guess because we have Robert in our family we don’t really think much about CP.  Robert is who he is and it never crosses our mind that he might be seen as different.  He’s just a neat and ornery kid.  But to the outside world, he is noticed.  He is stared at.  I think it’s the adults that stare the most.  Kids are very accepting of things until taught differently by the adults in their lives.

People think that people with CP are “retarded” (which is a horrible word by itself).  It’s called “Developmentally Disabled” people.  Get with the times.  But, Robert is not developmentally disabled/delayed.  He has a perfectly good brain when it comes to that.  So if it hurts me when I see people stare or shy away…you know it hurts him.

Some people think that it’s contagious.  No, really.  They do.  It makes me laugh, too.

Cerebral palsy is caused by brain damage that affects a child’s ability to control his or her muscles. The part of the brain that is damaged determines what parts of the body are affected. There are many possible causes of the brain damage. Some causes affect how the child’s brain develops during the first 6 months of pregnancy. These causes include genetic conditions and problems with the blood supply to the brain. Other causes of cerebral palsy happen after the brain has developed. These causes can occur during later pregnancy, delivery, or the first years of the child’s life. They include bacterial meningitis and other infections, bleeding in the brain, lack of oxygen, severe jaundice, and head injury.

Children who are born prematurely or who are very low birth weight (less than 1,500 grams or about 3 1/3 pounds) are more likely to have problems that might lead to cerebral palsy. However, children who are full term and normal birth weight can also have cerebral palsy. ~CDC.gov

This last sentence describes Robert.  He was born 30 minutes before his due date.  He came out weighing 9 pounds!  His mother was in the hospital awaiting a planned induction when his heart rate fell dramatically.  He rolled around and compressed his cord several times resulting in oxygen deprivation.  It was only after the 4th or 5th time (I think…his dad could say for sure) that they delivered him.  By then, it was too late and the damage had already been done.

He spent a month in the NICU enduring seizures and other complications.  We did not know he would have cerebral palsy when he left the hospital.

So today for Cerebral Palsy Awareness day, I just ask that you pay attention.  Teach your children acceptance of things that are different.  Perhaps visit a home or hospital where you can volunteer your time.  Learn about them.  Learn who THEY are, not what their body indicates they might be.  Visit the United Cerebral Palsy website to see what you can do to make a difference in someones life.  Maybe make a donation that will go towards education and research.

Filed Under: Current Events, Family Life Tagged With: ,
« Older Posts