Flying Colors Bake Sale

What a wonderful event yesterday! Ashley's best friend, Cindy, held a Bake Sale Fundraiser to help in our fight against SMA at her family's business, Flying Colors Comics. We had SO MUCH FOOD!!!!! It was amazing. So many wonderful people donated home made goodies. And Cindy was brilliant. On the drive down, I was thinking MAYBE we would make $300 --- and Cindy said her goal was to make $500 - but we made $2,034.00!!!!!

Each penny is going to Sophia's Cure, which is a wonderful foundation set up by Vinny and Catherine Gaynor, who have a daughter, Sophia, with SMA just like our Charleston. They will donate it directly to Ohio State University/Dr. Brian Kaspar, who is leading the fight against SMA with Gene Therapy. We're so excited that the fundraiser was such a success. 

Joe, Cindy and Ashton Field - the organizers of the event!

I want to thank everyone from the bottom of my heart that was involved - Cindy, her parents, her little boy Ashton....thank you for loving us like you do and for organizing the event and making it possible!!!! To all my friends that showed up to help and with baked goods.......AND WITH MONEY!!!!!! I love you all. And to the wonderful Flying Colors customers and people that came by because they "heard" about it - every single penny added up to over $2,000.00!!!!! I have a happy heart. With people like this, SMA doesn't have a chance - we WILL win.

Debbie Black (my first ever friend), Dean Parrish (my mom's best friend), and Lisa Caldurulo (Debbie's daughter)

Shauna Maffei and her son, Vincent

Cash's Uncle Graham

The Allen's - Carl, Jonathan (aka Little Dood), Ashley & Donna

Wonderful family friends - Shane and Linda Moldovan.

More Moldovans! Linda, Mandy, Warren & Daniel.

One of the tables of goodies.

Adam & Claire

Charleston's godparents, Tiffany & Travis Vandevoir

Greg White, a friend of Ashley & Cameron's from high school

Mrs. White, Greg's mom 

Amanda Paustian, another friend from high school!

Amazing Mickey Mouse cupcakes

Mickey Mouse pants!!!!

RJ Bisaha and his sweet girlfriend (he's another friend from high school)

Libby Field keeping Ashton occupied - what a great grandma!

Deena & Mike Zeidler

Mickey Mouse cake!!!!

Dan French, a guy that used to work with my son, BJ, who has become a member of our family!

Grandpa "GiGi" Goeppert

Guy & Karen Golightly (their daughter, Kam, is a friend of Ashley's from grammar school!)

Will You Be My Valentine?????

Today was wonderful. Because I have my Charleston for Valentine's Day.

I miss her.

Today is a really, really, really hard day. I am so lonesome I can hardly breathe. I miss my daughter. I talk to her every day, usually several times. We text each other all day. I see her all the time. But I miss her.

She's not only my daughter. She's my best friend. And I miss her.

We used to do everything together. Movies. Lunch. The beach. Barnes & Noble. Baskin/Robbins. SHOPPING!!!! Facials. Mani/pedis. Walks. Vacations. I miss her.

We used to laugh all the time together....sometimes with each other, sometimes at each other. I miss her.

I wouldn't trade him for anything in the world......I never want to see life without him. But I sure miss her.

SMA Gala Fundraiser

This week I was lucky enough to attend an amazing fundraiser for SMA. It was in Los Angeles, and was put on by the Prendiz family, who have an SMA angel, Hannah. It would have been Hannah's 2nd birthday.

First of all, I met the most amazing people!!!! There were about 7-8 SMA families there, including 3 kids. Each family had its own story......but really, our stories are the same. We "get" it. We know what it's like to hear those words "Your baby won't live to be 2." We know what it feels like to watch your baby stop breathing. We know what it is to love these kids. And some of them know what it's like to bury their baby. I never want to get there. Here is a picture of the SMA "family" that attended:

Which brings me to what I learned!!!! We have researched so much of what's out there for SMA --- and now believe that the biggest impact on our little Charleston will be from gene therapy. Not that any of the other things won't be a help also ---- but it looks to us like gene therapy will make the biggest difference.

There is a family, Vinny & Catherine Gaynor, who have a daughter with SMA, Sophia. They have started a foundation - Sophia's Cure, http://www.sophiascure.com and are raising money to help fund the gene therapy research done by Dr. Brian Kaspar in Ohio. Vinny & Dr. Kaspar were both at the fundraiser, and I had the pleasure of spending time with them and coming out of there with HOPE. Dr. Kaspar is an amazing man. He loves our babies. He is doing his utmost to save them. And we adore him for it. This is Dr. Kaspar & I at the fundraiser:

Our biggest hurdle is money. He is THISCLOSE to taking it to the FDA for the 1st clinical trial. He gets his funding from families like us. Fundraisers, donations, garage sales, bake sales, ebay sales, golf tournaments, donating a portion of sales, etc. And we are all helping in whatever way we can!

Ashley's best friend, Cindy Field, is organizing a bake sale just for this purpose. All proceeds will be going to Sophia's Cure, which will send them on to Dr. Kaspar's program. Here are the details:


"Hope for Charleston" SMA Research Fundraiser and Bake Sale


Time

Saturday, February 19 · 12:00pm - 5:00pm

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Location Flying colors comics And Other Cool Stuff

2980 Treat Blvd

Concord, CA

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More Info

WHAT: "Hope for Charleston" Bake sale (yummy treats, healthy options, and some comic book giveaways too!)

Spinal Muscular Atrophy (SMA) is a motor neuron disease. It is the #1 genetic defect killer of children under the age of 2. Often parents are carriers of the disease but show no symptoms. Over time the disease can interfere with muscle control in any part of the body including those connected with breathing and swallowing. H...owever, there is STILL HOPE. A cure is right around the corner!

***all proceeds go directly to SMA Research***

WHEN: Saturday, February 19th, 12-5pm

WHERE: Flying Colors Comics and Other Cool Stuff, 2980 Treat Blvd., Concord, CA (Trader Joe's shopping center)

DETAILS: Concord natives and Carondelet and De La Salle graduates, Ashley and Cameron Goeppert had a baby boy, Charleston "Cash" Sage Goeppert on December 1st, 2009. Ashley, a registered nurse and Cameron, a volunteer firefighter in Verdi, Nevada, thought that they were having a healthy baby boy. Tragically, they were told at Cash's three month check up that he was"floppy" and tests proved that he had the genetic disease SMA. This devastating news has not stopped them from doing EVERYTHING they can to keep their baby boy. Ashley quit her job as a nurse and takes care of Cash 24 hours a day, doing numerous types of therapy with him. He is a happy, smart, funny, handsome and loving 13-month old. We want to find a cure to help save his precious life and every child afflicted with this horrible disease.

We hope you can attend if you're local!!!! And if you're ever looking for a wonderful foundation to donate to........................remember  Sophia's Cure .  They're a family, just like us, trying to save all of our babies. Charleston says thank you!!!!

Good Things About SMA

I've been thinking positively about SMA lately. Instead of constantly focusing on the FEAR, I'm trying to focus on the wonderful things that SMA has brought to my life. Because believe it or not, there are some wonderful things!!!!

Charleston wouldn't be Charleston without SMA. As much as I hope and pray and BELIEVE that he will receive the "cure"...... I love him just the way he is. You see, he has these beautiful, deep blue eyes. When he looks at you, he speaks to you through them. Sometimes he even gives me butterfly kisses, and when he does that, it melts my heart.

He's happy. He's surrounded by the love of our family (especially his incredible mama who never ever ever leaves his side). By him having SMA, Ashley has been able to stay home with her beautiful baby and be the most devoted mother I've ever known. And he gets to received oodles of love every second of his life.

We've been re-introduced to Mickey Mouse!!!! Hot dog, hot dog, hot diggity dog. Who would have thought that at my young age of 54, I'd be dancing to a hot dog song????? See, that's another good thing about SMA.

We've "met" other amazing SMA families. Through Facebook and SMASpace, Ashley is helped daily by friends that are living the same life as she. These other parents truly know more than the doctors, and because of them, we still have Charleston. Last year I went to an SMA Conference and met a few of them in person, and this weekend I'm traveling to LA to attend a fundraiser, and will meet even more. I can't wait to give a few big hugs!!!!

Other wonderful people have come into our lives as well. Last summer, out of the blue, I heard from an amazing woman that had never met us, but had heard of our little Charleston and wanted to help. Her name is Katie Patterson. She put together a huge fundraiser downtown Reno, along with the volunteer firefighter family up here (I couldn't stop crying!!!! - surprise, surprise). They raised enough money for Ashley & Cameron to purchase a van to transport the baby in, and they just ordered two more pieces of equipment that he needs. Without Katie and the support of the firefighters, we wouldn't have been able to get the things that we need to help him with his life.

SMA has also taught me to slow down (well, kind of). I take the time to smell the flowers, because Charleston loves them --- so when the weather is good and he can leave the house, we go for walks and find flowers. You should see his little dimpled hands holding a flower to his face, and the look in his eyes when he looks at one. Precious. I've learned to enjoy poop in a bathtub!!!! It cracks me up! I love it when my house is full of baby stuff....granted, a cough assist machine and oxygen tanks aren't exactly what I pictured when Ashley was pregnant, but now I love it when all that stuff is here, because it means he is too.

I know who my true friends are. You know who you are. Thank you, I couldn't get through this without you.

There are good things about SMA. This little boy is one of them.

The Best Christmas Ever

We had an amazing Christmas. Charleston got to participate in everything we did!

First of all, I got him a little Christmas tree for his playroom. Then I went to the Disney Store to look for Mickey ornaments - and GUESS WHAT!!!! They had them!!!! So I bought every single one. Here are some photos of the little family decorating his little tree:

Then, of course, they decorated their big family tree in their living room:

Of course, we had to make cookies and candy for all of us to eat. And Charleston helped us all the way! First were the sugar cookies:

All little boys like to get ooey gooey!!!!

And of course little mama had him make some Christmas projects!

Christmas Eve was amazing. Charleston, Ashley, Cameron, Unkie B, Grandpa Greg, and I were there. We had a great dinner and loved being with baby boy!!!! I received the best gift I could have ever wished for --- he called me NANA!!!!!!! He said it out loud so everybody could hear it. I never thought I would hear that --- my feet still haven't touched the ground!!!!

Even Unkie B couldn't resist his cheeks.

The loves of my life.

Proud and happy little mama!

Check out Charleston's expression....it's like he's saying  WHEN ARE YOU GONNA LEAVE ME ALONE!!!!???

Christmas Day the little family opened Cash's stocking and presents with him. He's not spoiled!!!! Santa was just really good to him this year, because he knows what a special and strong guy he is. Thanks Santa!!!!

It was an amazing Christmas for our family. We are so grateful that we have Charleston. He is teaching us all so much, and we are amazed at his strength. Here's one last picture to put a smile on your face!!!!

I've never seen anything so cute in my life.