inkDOTS

A special thank you to inkDOTS for creating and donating the sign for team Where There's a Will... There's a Way.

It's waterproof, so everyone be sure to look for it at the walk on Saturday! Our team will gather under the sign.

Thank you for supporting our team and thank you to Elyssa for securing this donation.

Holy Moses!

I am humbled beyond words... we've raised nearly $20,000. $18,300 on the Energy For Life website and $1,200 at the Baskin Robbins event.

All I can say is THANK YOU.

If you are planning on walking Saturday, please be sure to pack an umbrella or rain gear. Not sure when the front will hit either.As the Houston saying goes, just wait five minutes and the weather will change in Houston.

We've had a flurry of new sign up and contributions in the past 24 hours... THANK YOU!

Deborah Anderson

Mark Browne

Craig Bullock

Cord & Daria Conlan

Doug Crosson

Mark & Patti Day

Mary Day

Angela Denslow

Elisa Diaz

Jeff Fahrenbruch

Mari Farmer

Laura Fanelli

Ryan, Ashley, Charlie Farrell

Kevin Fleming

Stephanie Fleming

Sandy Gonzaba

Michael & Jennifer Hamlin

David Hardin

Monroe Helm

Eric, Kelly & Rachel Herrera

Bill & Carolyn Hlozek

Michael Holley

Mike Jan

Maura Kolb

Sherry Lantis

Mark Luchsinger

Maria Teresa Luis

Rick Manuel

Justin Martin

Scott McDonald

Anne McLaughlin

Joseph McMullen

Hugh Morton

Justin Pickard

Travis & Amy Piesker

Kittie Perkins

Darcella Roberts

Derrick Roberts

Aaron Skipwith

Donna Simmel

Tracy Vigil

Joyce Walter

John Williams

Charmaine Winters

Will and "baby" at the Baskin Robbins event. He loves that baby cousin of his so much that he calls him brother. (Is that a hint for mom and dad Will? haha)

31 Flavors and Eating

Thank you all so very much for your support! Last night at Baskin-Robbins, the line was long, the kids were on a sugar high and the adults were very giving. Through a donation jar and the 20% of proceeds on purchases, we raised a little more than $1,200. This should bode well in helping us exceed the $15,000 goal for the upcoming walk.

The super friendly Baskin-Robbins scoopers and the store manager, Shawn (upper right). If you go into the store, please tell them thank you!

If all these medical bills ever put us in a cardboard box, we'd have a great little beggar. Will snitched icecream off everyone there, including Dee Dee.

This exceeded my wildest dreams and expectations. Thank you all so much for posting on Facebook, telling friends and showing up, despite the rain and general yuckiness of the day.

A special, gigantic thank you to Beth Williams, Elyssa Horvath and my mom! They surprised me with green wristbands that say “Where There’s a Will… There’s a Way” to help raise money and awareness. Without these three ladies, last night’s event would have not even happened. Thank you so very much.

Thanks to those who have signed up to walk and/or contribute to the Energy For Life walk. I can’t believe it’s on Saturday! Shout outs to the Sims’ (Josh & Sheila), the Tsai’s (Ken and Janae) and the Murphy’s (Daniel and Sara) that have collectively raised nearly $4,200. WOW! That’s an incredible amount of money and we so appreciate your efforts.

Aneesh, Meenal & Anand Balakrishnan

Crystal Cao

Paul Cheng

Sophia Cheng

Chad Gardner

Davin Huang

Peter Lee

Mike, Amber, Evan & Cade Lewis

Annie Lin

Karen Lin

Rochelle McCall

Benjamin Ong

Jared Parcell

Matt Parcell

Dani Ramirez

Amanda Royle-Squires

Bill & Carolyn Schoenfield

Jaedeanne & Ruby Shaver

Tony Shelton

Lindsey Thomas

Anthony Tsuei

Clint Woods

My lame attempt to get some protein in Will before all the sugar.

Baskin Robbins TONIGHT!

Please don’t forget to come to Baskin-Robbins at Ella and 43^rd near the Kroger shopping center tonight! 20% of sales between 5 and 10 p.m. will go to UMDF in Will’s honor.

I'm thinking about buying an ice cream cake for the office. Just what we need in our work freezer.

Our Team “Where There’s A Will… There’s A Way” has raised nearly $11,500! That has far beyond exceeded any hope or expectation I could have ever had, so, I upped our goal to $15,000! Thank you all for posting on Facebook, asking friends and family to contribute and being so supportive.

See you on Saturday!

New thank you's go out to:
Jack Bellows
Laura Bellows
Joey Broussard
Katie Butler
Jackie Etheredge
Eddison Fu
Robert Gardner
Wes Hildebrand
Andre, Bridgette & Cooper Kostelnik
David Kotzebue
Michael Largent
Mark & Cynthia Latour
Leslie Madison
Julie Menele
David Morris & Anne Lewis
Sara Morton
Erin Sinisi
Jim Stevens
Many Sutphen
Melissa Thompson
Adam, Stacy & West Walton
Erin Wu
Mike Wu
Irene Yang

Mito Carrier Update

I have been negligent in announcing some very exciting results! You might remember from a few posts ago, that the cause of Will’s mito disorder comes from a genetic mutation that is only passed down through the mother’s egg. (it’s different for other types of mito, this statement is relevant only to Will).

So, my grandmother, my mom’s mom, was tested to see if she too is a carrier of the Mito mutation. If she was, then my mom’s three sisters and one brother and all their children and grandchildren would be at risk for having the same mutation. I think that would have been nearly 20 people.

My grandmother tested negative for the mutation! Yeah! So you might wonder how this even happened to us? Apparently, when the egg and sperm meet up they both bring some sort of “gene mutation cleaner” with them. There is some organism that is supposed to clean up any of the abnormalities while the baby is the womb. There’s a very rare chance that those things don’t work, and then an even more rare chance that the mutation is passed along. So here we are, a rare species over here. I’m sure there are more scientific ways to explain this, but I’d have to do a lot of googling.

In other news, another round of thank you’s to those who are signed up for the Energy For Life walk. I can’t believe it’s on Saturday! The weather is supposed to be perfect.

Joey & Elizabeth Borski

Monica Danna

Cara Durnin

Debbie & Roy Henderson

Kim Humrichouse

Manith Kong

Debra & Greg Kaul

Colton & Camryn Klingensmith

Graham, Amie & Taylor Mitchell

Dianne & Danny McCormick

Cari Morgan

Diana Morris

Scott Mosley

Stacey Murchison

Nancy Pike

Waco Rainey

Erin Saladino

Mark Stevens

Alexis Thorne

Andrew Yang

Carrie, Cody, Brennar, Brody & Breyton Zobac

If you haven't signed up yet, there's still time. And don't forget, we're going to Berryhill in the Heights on 11th street if you'd rather just meet up there.

Neil and I went to New Orleans this past weekend for what was possibly the most fun wedding ever. Will stayed with my parents and they all went to IHOP after church and got balloon hats (above). Carson and Will had a blast and Will came home pooped and ready for bed.

Hello again!

Well, it’s been a while since I posted, which is somewhat unlike me. I guess I’ve been in a personal thoughtful place about planning our future and not know when our time with Will is going to expire.

Since Christmas, we’ve spent a more “intense” time with Will. We’ve had a long weekend here and there, plus the Christmas break. It’s hard to let go and get back into a routine of not seeing him every day.

You hold him and you want to hold him so tight to seize the moment, but all the while you feel it slipping away. Very bittersweet.

He has a bit of a cough right now, which puts me on pins and needles with worry. No fever, not even a runny nose. So what the heck is it?? It’s not a croup cough; it’s not in his chest. ??? Ug.  Something is going on with his body that is taking energy from other places where he needs it to recover from this cough.

After realizing that for the past two weeks, Will has only had 3 BMs on his own, the others have been with a suppository, I decided to research some other options than Miralax and suppositories. About the same time I was introduced to a new mito mom and as we compared notes, she recommended L-Reuteri for his constipation.

We tried it at night and the following day he had a BM. Or as Will yelled to everyone at school, “ME BIG POO POO in POTTY” – clearly we make a big deal of poo poos in our house, especially when they are in the potty. He was mighty proud of himself and I was mighty happy. Hopefully we continue to see results.

In Energy For Life walk news, we’ve had a flurry of new people and donations coming in. We’re now just a $2,000 away from the $10,000 goal and I would love to exceed that. Seeing names of strangers, friends and family as part of our walk has given me inspiration, unexpected joy and a sense of hope that maybe one day there really will be a cure and that it will be in our baby’s lifetime. Excuse me, in our big boy’s lifetime. He’s not a baby anymore!

Special thanks to the following people for their contributions to UMDF:

Sally Allen

Christina Almy

Jack Beck

Jennifer Bersani

J.B. & Nicole Brafford

Marian Brinkman

Divya Brown

Ruby Busker

Vanessa Cadena

Alexa Castillo

Oscar Castillo

Brittany Chabolla

Jennifer Cheng

Tim Chuang

Victoria Clites

Maria Contreras

Douglas Dawson

Jean Davies-Jones

Emma Doss

Patricia Edwards

Ryan Ermis

Maxine Eichner

Darla Fanelli

Mike Fann

Carrie Fielder

Tate Fraske

Wren Fraske

Lois Girten

Jeremy Gonzales

Veronica Gonzales

Michael Gracia

Dan Grady

Mary Hatala

Kenneth Haynie

Elizabeth “Susie” Hernandez

Joel Hernandez

Andrea Jiles

Jody Kerwin

Carlton Kon

Lauren Lindsay

Pamela & Matt Merhan

Ashley McCormick

Scarlett McDowell

Steven McDowell

Anthony Nguyen

Kristina Ortega

Jake, Emily & Luke Parsons

Judith Perales

Craig, Tahra, Caroline & James Peterson

Jody Philley

Sengkeo Phrasavath

Joseph Rafferty

Teresina Rafferty

Stephanie Riceman

Monica Sanchez

Marissa Serna

Victoria Serna

Greg Scogin

Jennifer Scogin

Gracie Sims

Gary Stinnett

Brian & Teena Stoker

Claire Thielke

Devin Torrez

Marcus Torrez

Kenneth & Janae Tsai

Liane Tsai

Stephen Tsai

Joe Ueng

Sylvia Wagman

Christina Wang

Amber Whittenton

Renee Winder

Hard to believe this was Will at 1 year old. His knees locked and not even able to cruise, walk or stand independently. We've come a long way. This past Christmas marked the 1 year milestone of how long he's been able to walk independently.

Another Round of Thanks!

Many many thanks to all of you who joined and/or donated in the past week. I can't tell you how much we appreciate the support. It's going to be an awesome day and it's because of people like you. Only three more weeks to the big day.

Gary & Donna Abbott
Sarah Arnold
Rachel Buckley
Lindsey Brown
Kellie Byers
Lane & Kaelen Enderby
Jim & Lynne Hackerdorn
Sandy Lea
Deb Giedris
The Gell's
Jason Hollis
Don Holmes
Joe Lea
The Majewski's
Lisa & Contessa Moore
The Montemayor's
Amanda Oudt
Ry Pickard
The Pike's
Amy & Chris Price
Pat Sorrells
The Williams'
Scott Wolff / Transwestern San Antonio
Charles & Lyla Wooten
Cody & Carrie Zobac

Will doing the stairmaster getting ready for the walk.

*Please, if I missed your contribution I sincerely apologize. I do these posts at night and sometimes I'm not totally functioning.

Don't forget on Jan. 31 to go to Baskin Robbins on 43rd and Ella between 5 and 10 p.m. 20% of the profit will go towards our fundraising goal. You must mention TEAM WILL when you pay.

Also, if you live in Katy, another team the Pohlarbear Pack, is having a fundraiser on Sat. Jan. 28 from 5 - 8 p.m. at the Cinco Ranch Chick-fil-a in Katy at 23860 Westheimer Pkwy, Katy, Tx 77494. 10% of total sales go to UMDF. As they say, Eat More Chicken!

Energy For Life walk update

Team "Where There's a Will..." a few updates for our teams festivities!

Team t-shirts have been vetoed off my island, too hard this year. So, whatever the mood / weather strikes you on Feb. 4 - go for it! Get crazy if you want, make a shirt, wear a fun hat, feather boa or whatever suits your fancy. You also can purchase Energy For Life walk t-shirts on the website.

We are going to do green bandannas so everyone will be able to identify the group. Additionally, Will's school is making a banner and doing all the kids hand prints! THANK YOU!! If the mood strikes you to do a banner or sign, go for it!

My mom happens to know the owner of the Berryhill in the Heights on 11th street, so we're organizing some post-walk gathering at the Berryhill. So please join us for that if you can. More details coming, courtesy of the work of the wonderful Elyssa Horvath! I'm hoping it will be a time to visit and celebrate life!

I might pay you some money if you show up looking like these guys...

I Scream, You Scream...

We all Scream for Ice Cream!

Thanks to the amazingly awesome Beth Williams, there will be a fundraiser for UMDF in Will's honor on Tuesday, Jan. 31 from 5 - 10 p.m. at the Baskin Robbins on 43rd street across from Oak Forest Elementary school. (1354 West 43rd Street).

Not only did she talk to the amazing store owner, Mr. Shawn Salyers into giving UMDF 20% of all proceeds during that time frame, but she made the flyer. Thank you Beth for all your support and generosity. I can't tell you how appreciative we are!

Side bar, did you know that literally every year for Neil's birthday he wants (and gets) a chocolate peanut butter ice cream cake from Baskin Robbins? Come on over and by a cone, a pint or a cake - I will be doing a frozen yogurt in line with my diet commitment.

Where there's a Will...

Thank you all for signing up for the Energy For Life walk and donating to UMDF. There's still plenty of time to sign up since the walk is the first weekend of February, but it will be here quickly! So don't delay. See my previous post on the easiest way to register.

So far, team "Where there's a Will" has raised more than $3,000 and we have 51team members. I'm sure it doesn't shock many of you to know that I can be a tad competitive.  I heard that some team last year actually raised $50,000. Thankfully, I am not that competitive!

Special shout outs to those who have registered and/or contributed:
Amy Allen
The Bilski's
James Byers
Elliot and Tom Day and Jennifer Moore
Michael DeScioli
Deanna Draper
Allie Falender
Carrie Fielder
Lisa Flores
Jennifer Ford
The John Garcia's
The Gell's
Hank & Diane Goggan
Lisa Goggan and Tom Kaul
Kyle & Kristin Kotzebue
The Haas'
Ra-Nell Haas
Michelle Vinklarek Hanson *the first person to donate I might add!
Chad, Julie, Carson & Cameron Hayes
Archie, Judy & Katy Hayes
The Horvath's
Peyton & Murphy Jones
Justin & Erica Martin
Pat & Ed Martin
Carolyn Mayo
The McCormick's
David Morris & Anne Lewis
Cooper Mullin
Sara Murphy
Jason Parcell
Joanna & Sam Parigi
Carlo Pruneda
John Ramirez
Maidie Ryan
Caroline Schlemmer
The Sims'
Lisa Spence
The Starnes
Leila Thorne
Diane Treider
The Wende's
William White
The Williams'

I know many of you have been fundraising within your networks and I really appreciate it. If I missed anyone, please please let me know. I'm still trying to figure out how to navigate the website.

Also, a special thank you to Beth Williams and Elyssa Horvath. These two friends have gone above and beyond. Be on the look out for future blog postings of their efforts and FUN FUN stuff.

Energy For Life Walk - Sat. Feb. 4, 2012

Energy For Life Walk! It's coming, Saturday,  Feb. 4 2012!

Please join our team "Where There's a Will...." There's a Way!
The easiest way to join is to go to the website,

1) Go to the website, www.energyforlifewalk.org/houston 
2) Click on the Register button
3) Select "Join a Team"
4) Search by "Team name"
5) Sort it by "Contains" NOT start with. There is a drop down box, just select "contain"
6) Type in Will
7) Select the team "Where There's A Will..."
8) Click on the big yellow button "Join Team"
9) Please note, each person who is going to come, MUST fill out the form separately. You can't fill it out for one family. If you have a family of 4 coming, then you should register 4 times.
10) Fill out the form and submit.

Date: Saturday, Feb. 4, 2012

Location:
Sam Houston Park - Downtown
1100 Bagby Street
Houston, TX, 77002map it

Registration Starts: 1:00 pm

Opening Ceremony: 2:00 pm

Walk Starts: 2:10 pm

Parking Information: Parking can be found in several nearby parking lots or on the street. Please bring a few dollars to pay for parking at either the lots or at the parking meters. (The parking meters are no longer free on Saturdays.)

If anyone has a connection to a t-shirt person please let me know. I'm trying to get shirts made that say "Where There's a Will... There's a Way" and include the UMDF and UT Mito Center logo.