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Family Seeks Transportation Grant Money For Daughter With Cerebral Palsy

by James Quinlan
(Wheeling, WV. USA)

Hello. I am James, a 26 year old, married for 6 years. I have two kids. Both are disabled.

I have my 10-year-old stepson with a manageable mental disability and a 20-month-old daughter who was recently diagnosed with diplegic cerebral palsy.

I will tell you of how she came to have CP but first I want to tell you of the miracle and nightmare that happened first.

It was Christmas Day 2009 around 10 pm and my wife Debbie and I had just gotten back from my mom's house for Christmas dinner.

We decided to lie down and watch a movie together because our son had chosen to spend the night with grandma.

We didn't complain. It was a peaceful night and we wanted to relax a little bit from all of the hustle and bustle of the day.

We put a movie in to relax to. Shortly after, Debbie told me she felt a little crampy. I suggested that maybe a nice quiet warm bath might help to sooth her. She agreed but only an hour or so later.

My wife was in the bath, or so I had thought for about an hour. Debbie ended up drawing a bath but was only into it for about 20 minutes before she went into full-blown contractions.

I found out afterwards that she was lying on the bathroom floor for the better part of a half hour in pain not able to call for me to come help her.

I had no idea what was going on when she finally made it to the living room and told me something wasn't right.

I immediately got up off of the couch and took her to the hospital. At this point we are 2 hours home alone for the first time in what seemed like months and it is midnight.

Our OB/GYN was 32 miles away and would have taken 45 minutes or longer to reach and there was no time for that, so we went to the nearest hospital and made it there in about 20 minutes.

By this time, it was 12:20 am and we had just made it to the ER. I yelled for a nurse and wheelchair and they took my wife and me directly to the maternity ward.

At 12:36 am our precious baby girl Brady was born. It was an intense 36 minutes that seemed to drag on forever. Brady came to us being full of life, screaming and crying.

It was such a great triumph for us to hear our baby's voice for the first time, because we had had 5 miscarriages and a stillborn.

An inexperienced nurse claimed that Brady had retracted and wasn't breathing. Once she declared this the hospital staff promptly intubated her 12 times in a 5 minutes period, cutting off her air supply.

They didn't follow protocol and caused vocal chord trauma, throat swelling and throat bleeding. Brady was in life flight at around 1 or 1:30 am.

That part is blurry to me because I was helping my wife cope with having another preterm baby, an episiotomy and a life flight all at the same time.

Once Brady reached the children's hospital she was properly intubated and was on a ventilator for 10 days, not because her lungs were undeveloped but because her throat was bleeding and swollen almost shut.

To further add to the distress of the situation the doctor came into the room and stated my wife was fully dilated and crowning, then walked right back out of the room with Brady being born face-first and still in the water bag.

This traumatic experience shook us up considerably and caused the now diagnosed diplegic cerebral palsy.

Brady was healthy at 3 pounds 2 ounces and 16 inches long. Now Brady is 20 months old and cannot walk, talk, or sit up on her own.

She has what is called clonus and hypertonia and spastic muscle movements that accompany her CP.

Think of clonus like Thumper from Bambi with his thumping foot but Brady can't control her thumping feet.

The hypertonia means she has very rigid and tight leg muscles that prevent her from being able to stand flat-footed. When we support Brady, her legs automatically cross like scissors and she stands on her tippy toes.

The hypertonia also creates a low muscle tone in her back making her very flimsy, thus not letting her sit up or walk or crawl.

It makes playing with babies her own age very difficult because she can't communicate or keep up with the others mobility.

Brady has learned to "Army Crawl" using her forearms to pull herself across the floor.

Since the birth of Brady I worked up until March of 2011. I went from driving semi-trucks to an office job selling comic book art for a prestigious talent agency.

Shortly after Brady started physical therapy it became apparent that I wouldn't be able to work any longer because we now have 2 kids with special needs and it is too much for one person to have to handle on their own.

We recently had our 1993 Buick Skylark break down on us and the amount it would cost would not only cripple us financially but is also more than the car is worth.

We live on a hill and winter is approaching us fast and we have no way of getting on and off the hill safely to get Brady to her appointments.

We were hoping that the Buick would last long enough for us to afford a 4-wheel drive vehicle but that is now a lost dream.

As of now Brady isn't on any medications because she isn't showing any signs of pain, yet. Once Brady is older and she starts growing more she will need to be on muscle relaxers and painkillers.

We are not looking forward to that because that means her hips are starting to turn out of the sockets and dislocate and her muscles are too tight. I hate to even think of it.

We have been discussing the use of leg braces to maybe help correct the scissor stand and her always being on her tippy toes.

We receive SSI for our son and that is now paying the bills. My wife and I have applied for SSI for Brady as well to help with some of the financial burden but it really isn't enough to live on or to purchase a vehicle.

We are ultimately looking for a vehicle or a grant so that we may get a reliable and safe vehicle to transport Brady back and forth to her much needed physical therapy appointments.

Comments for Family Seeks Transportation Grant Money For Daughter With Cerebral Palsy

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Oct 28, 2011
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Update
by: James

Well it looks as though we are going to get a car this week. I have been saving cash and have enough saved to put a down payment on a pre-owned vehicle. Thank you for the support and the links that you have shared here.

Sep 27, 2011
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Transportation
by: Ken

Hi Guys,

It's terrible that most of the programs offered out there have the stipulation on missing three appointments, but usually if it is a cause that can't be prevented, with a legitimate excuse they will restart the program.

Maybe you could explain your situation to your doctor and he may write a letter on your behalf to get Brady the treatment that is desperately needed. Maybe you could even get the doctor to call them for you. It's a shame that they do this to such an innocent child, lifelong repercussions.

Here are a few links to find a donated vehicle. Write your true heart-wrenching story and send them an email why you need the donation. So here are a few that you can copy and paste in your browser.
Best of Luck,
Ken
http://www.actiondonation.org/Reasons.html
http://www.onlinecardonation.org/car-donation-westvirginia.html
http://www.cars4causes.net/donate-car-west-virginia
http://www.donationline.com/donate-car-west-virginia-charity.html
http://www.givecars.com/
http://www.givecars.com/car-donation-west-virginia.html
http://www.carangel.org/

Sep 27, 2011
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Update
by: James and Debbie

Okay, Brady had her physical therapy cut this morning because of the attendance. We were told to use a sub-par program that is not effective in the treatment of people with Cerebral Palsy. The program is mainly for abused children and families. None of the people they send to the house are even licensed. The program only deals with kids until they are three years old. We're stressing big time. This isn't what Brady needs. I've failed again.

Sep 22, 2011
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Transportation help
by: Anonymous

Thanks Ken,

I checked out that link and found one possible resource. I will keep posting here as I get new information and have new updates to share.

In today's mail we received the contract from the lawyer. So far everything is moving along smooth in that area.

Thank you again for the most helpful links you have provided. The links have made finding resources a whole heck of a lot easier. Thank you!!

Sep 21, 2011
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Transportation Help
by: Ken

Hi James and Debbie,
This site might help you on your transportation needs. http://www.adrc-tae.org/
Ken

Sep 21, 2011
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A good shot
by: James !

I thought I would share that I took a few days and was able to get my car running again. Hooray! It was short lived, as tonight on our way home, the car caught fire. We are all safe but the car is now at its end.

Sep 14, 2011
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Your lawyer
by: Ken

Hi James and Debbie,
Just to let you know, the fact that the lawyer took this case on, is a good thing. They are lawyers, and don't work for free. They only take on cases that they believe they will win. That's GREAT!!!
Good Luck,
Ken

Sep 12, 2011
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Feedback
by: James Q

Thanks Ken. Debbie and I do believe all of this could have been prevented so we did some research into cerebral palsy lawyers and found a reputable lawyer who is going to take the case on a contingent basis. We are just worried that we won't be able to get Brady to her weekly appointments. Hopefully we can get something figured out.

Thanks again,

James and Debbie

Sep 11, 2011
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Life challenges
by: Ken

Hi James,

I understand how it feels to go from normal to unbearable. You will have to be aware that this is how it will be for the rest of your life, and make the best of it. It seems to me that this may have been avoided. Have you contacted an attorney about it? I would suggest a consultation with one as your savings will soon run out and you will have to come up with some sort of income. Here is a link to a specialized attorney on this subject. Just copy and paste it into the address box of your browser.

http://www.legalinfo.com/content/cerebral-palsy/west-virginia-cerebral-palsy-lawyer.html

I think you would want to go on a contingency agreement, as they can be very expensive and this type of litigation takes years to go through. But take a look anyway. It may give you some insight.

Good luck!
Ken

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