In Hopes of a Cure

The story of our fight with mitochondria, and hope for a cure, was featured on one of our local news stations tonight . . . WALB.com, Albany News, Weather, Sports

The interview was about 45 minutes, they cut alot.

But here is a Mitochondria "did you know"

 Mitochondrial diseases are difficult to diagnose. Referral to an appropriate research center is critical. If experienced physicians are involved, however, diagnoses can be made through a combination of clinical observations, laboratory evaluation, cerebral imaging, and muscle biopsies. Despite these advances, many cases do not receive ...a specific diagnosis. Most hospitals do not have a metabolic laboratory and therefore can run only the most basic tests. However, most hospitals will send specimens to any laboratory in the country. Not all laboratory tests are required for all patients, and your physician may decide that some of these tests are not necessary. In addition, a single blood or urine lab test with normal results does not rule out a mitochondrial disease. This is true for organic acids, lactic acid, carnitine analysis and amino acid analysis. Even muscle biopsies are not 100% accurate.

Thank you to the UMDF for the info above.
To learn more go to their website umdf.org.

It took us five months to get a diagnosis... It takes some even longer!

All In A Week

A lot can be fit in a few days of time.  I have had Annie and Pappy time this week and fun times with them. Mito joined us in it,and I would rather it not, but we were able to exercise several virtues to get around its presence.

PERSEVERANCE

Have you ever just wanted one something special to eat? That was Annie and me. I wanted
Mac n Cheese...my chair did not want to get me close enough to the stove, but I WANTED to help.   I wasn't quite ready to be up too straight (that has gotten better). So the tummy tube and chair offered us the obstacles. And Annie and I made it happen - we made a good team.  Mac n cheese was mine and then a game of Break the Ice!


COURAGEOUS

My Annie says I am courageous. I have gotten use to school and my friends (I have lots of friends at school) and I love going, but sometimes going out to other places kinda bothers me. The way my muscles freeze up, I get stiff and straighten and it is not comfortable. And I don't know when it will happen or where we will be.

Do you have a favorite place to go with favorite people? For Annie and Pappy and me, that would be
Saturday nights at The Back Porch (steaks, chops, chicken...good ol' eatin'). While I thought we should stay at home, Annie and Pappy talked me in to a trip to the Back Porch. And I had FUN!

Our dinners out - My Annie, My Pappy and me- go waaaayyyy back (my first pork chop??)

BRAVERY

On the way to dinner, my muscles siezed up some. I think Pappy noticed my face clench and saw that I had gritted my teeth. But I was brave through  it, and when it eased up, we giggled and laughed at the fun we had later. I ate steak, green beans and peach slices. Another favorite. My Annie says I am brave, a very brave soul.

GIGGLES

Annie had a fly in her ice in her drink!! She didn't seem to like having a fly in her ice! But, shhhhhhh....don't tell her it was fake and I put it there...


GRATITUDE

And then today...

I got a special surprise! Delivered by  special visitors from one of our church's UMW Circles ...

My very own IPad!!

This is for use with Occupation Therapy.  My fingers are not able to hold pencils like they use to. Now with the IPad, instead of using pens and pencils and paper, I will be able to do my work using it (I am a great speller, by the way). But don't think I won't play games on it too! I love video games. . .

The sweet ladies contacted a foundation that Paula Deen has, and I was selected for the IPad. They kept the surprise a secret from even my mommy!

And Dawnie? You can still come visit, even though I have an IPad now, too.  And it's ok if you forget your IPad, I can share mine with you!

... a very VERY large amount here!!

Thank you Elaine Bennet, Cindy Lawerence, Patti Howze, Roseanne Lewis, Susan Green, Jodi Mann, Aunt Peggy and all the other ladies for loving me and reaching out!

Thank you Paula Deen Foundation.

Mitochondria Awareness Week

Tommorrow wraps up the Mitochondria Awareness Week, as far as the "national" spotlight goes.  We know that this, unfortunately, is not just a one week affair. This needs attention everyday of every week.  Dedication of medical research. A cure to be found.

The community and family continue to rally around our family and work to raise the money to be a part of an upcoming drug trial of EPI-743. It looks like all bets are off on the trial in Ohio. California is the next destination. Sounds like a good spot!

Many more families are striving to be a part of this study also.  CNN ran a story today featuring another family fighting this fight and heading to a drug study.  Check it out HERE...

And don't forget . . .

Energize me even after this week!

Drug Trials

Drug Trials have been applied to and we are waiting...

While we wait, we are working out arrangements and plans to travel to Ohio or California, and for that, additional funds will be needed.  Here are the ways the community is helping us ready for the studies:

Pancake Breakfast

Sunday, October 7th

8:00 - 1:00 p.m.



  All proceeds will go to Curt in  some way - whether that is for the drug trial/living expense, or his current medical and medicine bills.  Even with insurance, the expenses are not all covered.

Class members will be selling tickets on Sunday in the foyer,

or you can get them in the office during the week.  

229-436-6336

Tickets are $5.00 

Boiled Peanuts

Michaels Breakfast and BBQ

Gillionville Road, Albany

Go by and purchase a bag of boiled peanuts. The proceeds from each bag go 100% to Curt's fundraising

Wallets

The Shoe Box

Dawson Road, Albany

The Shoe Box is selling wallets and the proceeds from the sales will go towards Curt's medical expenses. Need a wallet? Someone's Birthday coming up? Christmas Gift?

Donations

AB&T established an account for Curt.

Donations can be made:

AB&T National Bank

 P.O. Drawer 71269

 Albany, Ga. 31708-1269

Attention: Nita Gaines

Thank you all for your sweet blessings

 and prayers. . .

G-Tube

On August 21st I had surgery and I now have a G-tube.

A bear with a button from my mommy's friend in Seattle.
A blanket from the hospital
Another bear and blanket from children visiting from their church
And visting friends and family...kinda like a party

 (silly cousins!)

And more goodies (and there was a whoopie cushion too!)


I had lots of questions before the surgery, and I really did not want the nurses sticking me with any more needles. They put a tube in my nose, which meant I did not have to taste the gross the medicine, but having a tube put in your nose is not fun. But when I got sick during the night, it came out. 

Two days later I went in to surgery.

After waking up from surgery,  I was hurting bad. But after a few days, and I started healing, that got better. I now have a tube sticking out of my belly and it is healing well. The doctor said that in three weeks they will replace the tube with a button.

I am feeling a little embarrassed and a little different. I don't think anyone else I know has one of these. And so far I cannot sit up straight very long. Good thing my chair leans back!

Another good thing? I can eat ice cream or chicken fingers or whipped cream, but NO MORE TASTING THAT NASTY VITAMIN COCKTAIL!

First Grade

First Day of First Grade

What Friends Do

This is the work of my Mommy's friend ...

Energy For Life Walk - April 2012

We traveled to Atlanta to join in the Energy For Life Walk.

I got to lead Team Super C on this walk to raise awareness and money for Mitochondria research. My team was great and we came in 4th in fund raising for the event!!

See? These are my family and friends.

This is my cousin Justi...Sometimes others get to be the super hero.

Just for awhile... :)

My Annie and Pappy and Uncle Dee and Aunt Emily

and...

My Mommy!

Easter, 2012

How do you Easter Egg Hunt when your ride is a wheel chair?  That's when a great-uncle, who happens to be an engineer, sets you up!

A blower

A bucket

 Some shop vac hoses

A few Easter eggs

and of course some duct tape

(and screws and nails, but no puppy dog tails)...

And Easter egg hunt practice was a go!!

The Ramp

What a difference a ramp makes!

Wheels and stairs are not exactly friends.

Thank you United Methodist Men!!

Welcome...

Hi!

I am SUPER C !!

or

Captain C

Either way, I am on a journey.

Here is a quick run down of our whirlwind:

• April 2011: Running and playing and as they say "All boy"
• June/July 2011: started having problems walking by late afternoon. My feet hurt, I tiptoed and my hands sometimes turned different
• August 2011: School started and I started using a wheelchair while at school. I could stand some, I could walk, but it was real slow and sometimes really hurt.
• August 2011: The nuerologist has said that test show my basel ganglia is not working right and the first suggestion that I have a disease without a cure. 
• October 2011: After many doctors appointments and test, an appointment with a Mito Specialist in Atlanta, offered the first name for what might be happening to me: Mitochondria disease
• November 2011: Happy BIRTHDAY to me!! 6 years old!
• December 2011: They diagnosed the disease as Leigh's Syndrone. My trunk muscles have weekend and so has my appetite.
• January 2012: Full time wheelchair; but now we have a ramp at home! And an electric wheelchair on its way. I requested YELLOW.

This is our journey. This is our struggle. This is our battle. As you join us, please pray for us too. The prayers and love of so many are holding us up and giving us strength.