Reflections

It's hard to believe this is Charlee today and a year ago today. What a change this disease has made in such a short time. She was able to still walk and see a little, say a few words and pose/smile for pictures. I remember she stayed up till 1:30 that morning just as happy as can be!! She's taught me a lot of things but one of the biggest things I've learned is to make time for your children...cleaning your house can wait or making phone calls can wait!! Make time to video tape them, take them outside, read them a book, tell them you love them and don't sweat all the small stuff...remember they are kids, our time is what they want, need and deserve! Things can change so fast, tomorrow might be too late. I am so blessed that I can bring in this new year with my precious girl. Her spirit radiates the pure and innocent soul she is. She is more precious than gold! Happy New year Charlee's Angels. Be careful!

 

Precious Moments

Charlee was restless most of the day..daddy gets home to hold her and she falls asleep in 5 mins! There is a special bond between a father and daughter no one can explain. We love these precious moments!

 

Christmas for Charlee

We want to thank all of you who helped make Charlee's Christmas special. From the personalized ornaments to the smells and sounds of Christmas and the yummy breakfast to the very thoughtful homemade cards, we loved it all!! We are so gratef...ul to have had this special Christmas with our girl. What she goes through daily is heart wrenching but how she handles it is very humbling! Keep smiling my baby girl. Your smile makes my heart melt. Much love, Catrina

 

A Happy Early Birthday

We all have hard things to go through in life. How we choose to handle them is up to us. It's hard not to question God's plan or "ask why". Jeff and I have chosen to have faith and hit our knees in our time of need. It does no one any good ...to "ask why" instead look for the tender mercies, for there are many. With faith anything is possible! It is in 48 days (but who's counting) since Charlee's sat up and had strength to do anything! What a fighter, a true warrior of our Savior! She has incredible strength and determination. We all can learn from this beautiful special sweet spirit! Happy early birthday to me! The best present a mom could ask for. A happy day for all of Charlee's Angels.
Much love, Catrina
 

Charlee Video

Sweet Spirits

I found these and couldn't resist. What a bright, beautiful, fun 1 year old she was. This time of year has been extremely hard for me. Shopping and getting excited for Christmas only to realize my baby girl can't play with anything. My heart hurts because she's lost so much, but looking for the positive...she can still enjoy the Christmas music and we can enjoy her sweet spirit. Happy Thursday everyone!

 

New Hair!

No matter what length her hair is, she is so beautiful inside and out! Hard to believe we've cut a total of 18 inches in the last 3 months, but it is so much easier to manage! you my Char Char.

 

Count Your Blessings

The nurse just left and gave us great news...Charlee's lungs sound clear, the antibiotics are working! We are so grateful to all her Angels that pray for her daily! What a relief, finally good news came our way. Her sweet sister Cashlee s...ays to me " YEA I knew this would happen, I wished on the first star of the night and it worked" what a sweetheart she is. Since May '11 our beautiful Charlee has suffered a lot from so many things. Hundred's of tests done, poking, poking and more poking. She's lost all mobility, communication and eye sight. Just since the first of this month, we have watched her go from a 5 year old that could sit up and eat to being tube fed with no head or trunk control. She has lost so much, but her spirit has only gotten stronger. Through this all she still finds time to smile. I share her smile a lot to show no matter how hard life is, you can still find time to smile and count your blessings!!!

 

Home from the Hospital

I wanted to update you all on what's been happening with Charlee since we've been home from the hospital. She has been having 4-6 crying episodes a day. We have felt so helpless watching her cry and no matter what we'd do nothing comforted ...her. She's also been having lack of oxygen causing her face to turn colors, yellowish gray and gray blue. So heart wrenching. Friday she started running a fever, it got up to 104.3. She now has a pneumonia and a UTI. I know she is suffering but she is such a fighter and still finds the energy to smile! Please continue to pray she'll be comforted through this sickness and that it passes soon. Thank you!

Miracles still happen!

 

Sorry for the delay, but Charlee is HOME!!! We got home last night. We are still trying to get adjusted to life with this little sweeties feeds and routine, but we are all okay! We met a lot of great families during our stay at Primary's. This particular 11 year old boy named Seth and his family stole our hearts! He was in surgery just a day before Charlee getting a brain tumor removed. As w...e got to know this family through just a few short days we have grown to love them so much! I received a message from his mom today telling me they have gotten their miracle...the tumor is benign!!!! As tears filled my eyes and joy filled my heart for this wonderful family, I told Charlee the great news and she smiled her wonderful smile. I know they connected on a level none of us can understand! Miracles still happen! The power of prayer is real! I am so grateful for a Father in Heaven that loves us and carries us through our hard times. Thank you all for carrying me through the last 11 days through your kind words and prayers! And also to Seth and his family for showing me such great faith! Much love to you all!!

Going Home Smile!

 

So happy to finally be going home!

Day 9...

 

Day 9...yes we are still here! She is doing ok, but we are just trying to get her to tolerate her bolus feeds (faster non continuous). She had 2 crazy weird scary episodes yesterday from them. So we are slowing things down today and will try again tomorrow. If everything goes good we will possibly get to go home on Monday at the earliest. Thank Goodness we are so close to this amazing hospital with this incredible medical staff. A huge THANKS to them and all of you for your help, support and prayers.

Strong Little Angel..

 

 

Charlee is doing ok today, we are even getting a few smiles. It has been a very emotional week for me. Even with knowing her ability to swallow would eventually go, it hasn't made it any easier. Watching my baby go from a normal, active, s...mart, spunky little lady, to losing her ability to walk, talk, see and eat is harder than anything! So today enjoy what you have, for you never know when it will be taken from you! She really is a valiant spirit that is extremely special, anyone who meets her is truly touched by an Angel. I love you Charlee Bear!

Post Surgery..

 

Day 5 update. She has been in quite a bit of pain today, agitated and somewhat fussy. All in all she is proving once again how strong she is! So far she is tolerating her feeds great. I just pushed through her first dose of meds, easy peasy...! She's just awaiting a visit from her 2 favorite people, Jericho and Cashlee. I miss them too! We are now looking at being discharged on Friday at the earliest. Visitors welcome!
Love to you all!See More

Surgery...

 

Charlee went into surgery a lot later than planned, but she is now back in the room resting. It went good, she's just really sleepy still! She is such an amazingly strong little lady! We have a new plan in place to try a new seizure med that I'm very hopeful about. If all goes well with feeds, we will hopefully be discharged Thursday. Thank you all for your concern.

Prayers for our angel...

 

The results for Charlee's swallow study show her ability to swallow is gone, it is no loner safe for her to eat or drink by mouth. It showed she aspirates when she swallows. This breaks my heart! Food was one of the few joys left in her life, she loves to eat! They also have her hooked up for a constant EEG to monitor and figure out how to best control her increased seizures. They will be trying a few different seizure meds to see what works for her. Her G tube surgery is tomorrow at 3:30 pm. She is in a lot pain, crying a lot and very uncomfortable. Please pray she will be comforted in her time of need and that her surgery will be complication free. Thank you all! Much love, Catrina —

Little Angel...

 

 

Charlee is a little better today, now that she is getting hydrated. She is still having a lot of seizures. They just placed a NG Tube to start feedings. She is going in this afternoon for an upper GI study and on Monday to do her swallow te...st. (weekend is slowing us down) Once all that is done, they can schedule surgery to place her G Tube. Primary Children's will be our new home for at least 5 more days...Thank you for your continued prayers. Much love to you all!

Send Prayers...

Our sweet Charlee had to be admitted today. She is severely dehydrated and in need of a feeding tube. She's going on 3 days of not eating or drinking. This mono has really made her take a turn for the worse! She had a status seizure about 15 mins after she checked-in...she knows how to make an entrance! She had 10 Dr's/nurses by her side. Thank Goodness we were here! Please pray for her! Thank you!

Sweet Happy Spirit...

 

Thank you so much for all your prayers. We finally found out what is causing her so much grief. My poor baby girl has Mono. No wonder why she is so miserable. Today as I was talking to her I asked her "who have you been kissing"...she gave me a grin like she knew what I was saying! As a Batten child she has a very weak immune system and this is hitting her really hard. She is in a lot of pain! Please continue to pray for her and please share her page so others can pray for her too. Our time is precious with her and every minute counts! The sooner she gets better the sooner we can enjoy her sweet happy spirit again. Thank you, love to you all!

Still Smiling...

 

Even though the last 7 days have been rough on Charlee, she still finds time to smile. I think we can all learn something from her strength. She is such an amazing warrior, who blesses my life daily. Please pray for her to be pain free and snap out of this bad phase. Thanks!

Our Angels:: River House Band

Sponsor Spotlight: River House Band

 

River House Band is a classic and southern rock, country and blues cover band, that presents the best material spanning decades! They perform as a 5-Piece Band as well as an acoustic ensemble.

We were thrilled when they generously donated their time and talents to come and provide music and entertainment at our Charlee's Angels 5K event! Not only are they a group of very kind hearted and generous men, but they are incredibly talented as a group and individually! Read about them! If you are interested in booking them for your event, you can contact them here, or at: http://www.riverhouseband.com/home.cfm

Patrick McEwen: Rhythm, slide, fingerstyle, acoustic, dobro, resonator, and electric guitar; mandolin, harp, lead and backing vocals.

Patrick began playing in summer of 69' in Harrisburg, PA where he saw the The Temptations, Willie Dixon, and Hot Tuna in concert as a steady diet of music. Pat has evolved into an accomplished fingerstyle and slide guitar player that thrives in the roots blues genre, classic and southern rock, country, and gospel performances. Pat has has conducted fingerstyle and blues harp clinics at the "Snowbird Rock and Blues Fest" and currently teaches clinics at the Acoustic Musician in Sandy, UT. He has been playing solo delta and slide blues performances as well as with various bands in Utah over the years (that ultimately landed him in co-founding River House).

Wayne Arballo: Bass guitar, acoustic guitar, lead and backing vocals

A transplant from Southern California, Wayne has been playing the guitar and bass over 35 years. His influences include alternative, blues, country, classic and southern rock, and metal. He appreciates great musicianship in its simplest forms, signature riffs, and memorable vocal melodies. He thrives on groove and flow from the beginning to the end of a set. His greatest influences include most 70's bassists with the work of John Paul Jones, Steve Harris, and Geddy Lee in particular. Wayne instructs and performs guitar tech work out of his home studio. Over the years a variety of musicians and great friends has led him to settle into Utah, swithing to bass guitar, and co-founding River House.

 

Mark Falleroni:  Lead and Rhythm guitar, blues harp, lead and backing vocals.
Mark hails from a small, blue-collar steel town in western Pennsylvania. Encouraged by his father, an accomplished boogie pianist, he began playing guitar at age 11. He was influenced early on by Chuck Berry and the blues icon B.B. King. At age 15 he began playing in bands and the rest is history. He also is a master with the blues harp having added this instrument to his musical repertoire at the age 16. Mark’s addition to River House brings a mix of moving rhythms, versatility on the harmonica, and tasteful solos. His distinct ability for songwriting and musicianship reflects the product of an accomplished professional that distinctly sharpens the edge of a River House performance.

 

Bobby Bird: Drums, percussion. lead and backing vocals.
Inspired by the thriving Bay Area music scene of the 60’s and 70‘s, Bobby toured and recorded with numerous west cost groups sharing the stage with the likes of Tower of Power, Johnny Winter and the Greatful Dead. He's performed at the Cow Palace (Beatle’s fame) with the Hayden Project and was the creative force in DeJa Vu, and The Chessmen. His studies include an A.A. degree from Chabot College; B.A. and M.M. from Brigham Young University where he graduated with honors and was the recipient of the Music Education Award from the School of Music, and Ph.D. at the University of Arizona, Tucson in music education where he studied with John Boyd and received the Research Award for music education. He is an accomplished professional musician with several published articles and loves teaching music students. Bobby is a consument professional and provides River House with a powerful presence on the drums and musical insight."

 We are so grateful to be able to count River House Band as some of Charlee's Angels!

 

Buffalo Wild Wings Spirit Night

 

This Thursday, September 19th, at the Buffalo Wild Wings at the District in South Jordan we will be having a Spirit Day as part of our fundraising for Charlee!! We'd love to have as many join us as possible! Any patrons who dine at the restaurant or bar between the hours of 11am-11pm and present one of the tickets below (You must physically provide the ticket), will automatically have 10% of their bill donated to Charlee (beer and wine sales not included)!! We are so glad they were willing to do this for us, so everyone come on out during the day or evening and "eat wings, and earn money" while helping Charlee!!!

The address is: 

11332 S River Heights Drive (appx. 3800 W just east of Bangerter Hwy off 11400 S)
Please feel free to print off as many of these as you like and hand them out to anyone who would like to come and support us!!!

 

Our Angel:: Rusty Sessions with Sidewinder Media

 

 

Rusty Sessions owner and main photographer/DP for Sidewinder Media has been shooting photography for most of his life and professionally for about nine years starting with Wildlife and Nature. Today he shoots pro photography as well as HDSLR video/cinema using some of the top equipment including the well known for both high end photography and Hollywood quality cinema Canon EOS 5D Mark II cameras and Canon L series Lenses as well as many other gadgets and gear that make our video and photography some of the highest quality available today.

5% of ALL purchases from Rusty's website always goes to KeepArtsInSchool.org. The rest goes to support him and his goal of supporting his wife and kids with keeping his family strong and happy

He is a very talented and humble man, and has also been honored as one of Utah's Best In State!

 

Some of his past clients include:

-Utah Jazz basketball team
-SLC Bees baseball
-Harlem Globetrotters
-Danny Glover (Actor/Director)
-Peter Dinklage (Actor/Director)
-311 (Band)
-The Offspring (Band)
-Pepper (Band)
-Anberlin (Band)
-Civil Twilight (Band)
-Crash Kings (Band)
-Ok Go (Band) Photos and Video
-Suicycles (Band) Music Videos
-Business Forward
-Secretary Lisa Jackson (Administrator of the USA EPA)
-Rabbi Benny Zipple (Chabad Lubavitch of Utah)
-Governor Herbert (State of Utah)
-X96 Radio Station
-Daniel Day Trio (Band)
-Trenton McKean (Musician)
-Ebay (Utah department)

 

Rusty was so generous to offer his services at no charge to our Charlee's Angels 5K Benefit, and came the whole day photographing special moments and our racers crossing the finish line! The pictures turned out beautifully! Rusty has welcomed our participants to download their photo at no charge by clicking the file folder icon when they mouse over their photo. Giving you the opportunity to post your pic on Facebook and other social media sites. Rusty has also generously donated 50% of the proceeds from all pictures purchased from our event to go to Charlee's family for our cause!

Rusty is truly a generous and kind heated man, as well as an extremely talented Photographer, and we are so grateful to be able to call him one of Charlee's Angels!

 

To view pictures from the 5k Benefit click here:

To view Rusty's Website and services, click here:

or go to: www.sidewindermedia.com

You can also follow him on Facebook, or go to: http://www.facebook.com/SidewinderMedia

 

Thank you so much Rusty for sharing your amazing talent with us!

 

 

 

 

 

 

 

The River House Band

 

Charlee crossing the finish line pushed by Angela with Push to the Finish

Our Angels

We're so excited for Charlee's 5K and Fair coming up tomorrow, September 7th! We have had an overwhelming response and are upto almost 350 runners, which was higher than our original goal! Not too shabby for a first time run! Charlee is so blessed to have so many angels watching out and caring for her, we thank everyone with such full hearts!
With the event now here, we want to take some time to publically and personally thank each one of our amazing sponsors that have chosen to become Charlee's Angels on this journey with us!! We will take some time after the event to give them an individual shout out, but here's a huge hug from us here at the Charlee's Angels Headquarters! ( in alphebetical order)

A-1 Landscaping- Robert Lucero

All Spectrum Painting- Trish Bishop

All Occasions Photo Booths- Diane Busteed (www.alloccasionsphotobooths.com)

Brad's Cars- Brad & Jolene Nelson

BRH Transport, LLC- Boyd & Diane Hamilton

Buffalo Wild Wings at the District (www.buffalowildwings.com)

Bumper to Bumper Reconditioning, LLC- Josie McCloud

Chick-Fil-A Jordan Landing- Robert Dinsdale & Kathleen Whiting

      (www.chick-fil-a.com/jordanlanding)

Get Capped- Diane Fehr

Herbs For Health West Jordan-Vince Garcia

Inked Wear-Scott

Insurance Concepts- Brian Church

Little People's Dental- David & Corinne Stewart

MAAP Health Care
padicakes (www.padicakes.blogspot.com)

RanLife, Inc.

Redwood Pediatric Dentistry- Jason J. Horgesheimer, D.D.S.

River House Band- Wayne Arbalb, Pat McEwen (www.riverhouseband.com)
Scepter Group, LLC- Robert Lucero

Sidewinder Media- Rusty Sessions (www.rustysessions.com)

South Valley Compounding Pharmacy- Josh and Bart

Southwest Children's Clinic-Valerie Rahaniotis, M.P.
Stateline Metals-Kay Dunford

Surefire Pizza- Jeffery & Melissa Whitehead (http://www.surefirepizza.com/)

We'd also like to give a shout out to all those generous companies and individuals who donated items to be auctioned off in our Silent Auction, and also a sneak peak to those coming of what to expect to see!

Soccer City- Ultimate Birthday Package

Great Harvest Bread Company Taylorsville- Yummy Gift Basket and Free Bread to all runners

Executive Cleaning Services- Alecia Peacock- 2 4 hour cleaning gift certificates

Sprinkled with TLC- Tami Cromar- Assorted Party Gift Kits

Kevin Godfrey & Dive Utah- 2 Open Water Scuba Certifications, including all books and certification fees

Little People's Dental- David & Corinne Stewart- Dental Gift Basket

Pinecrest Dental- Tyler Williams, DDS.- 2 Sessions of In Office Power Whitening and Complete Dental Exam, X-rays and Cleaning

Twinkle Toes Dancewear- Mindy Oritz- Gift Basket, fun goodies and gift certificate

Jasmine Nails- Jennifer- 2 $25 Nail Service Gift Cards

Dustin Hamilton- $85 worth of Horse Shoeing Services and Super Cute Horse Shoe Frame

Anita's Salon- Anita Brady- $75 Hair Salon Gift Card

Cowabunga Bay- Anna- 5 Splash Passes for 4 hours

Coca-Cola- Jennifer Reese- 1 year supply of Powerade, and Powerade for racers at the finish line

Chick-Fil-A- Jordan Landing- Chick-Fil-A Sandwiches to all runners after race

Red Mango- smoothies to all runners after the race

Image Studios- Brooke Garner $110 in Hair Services

Big O Tires- $25 gift card to Megaplex Theatres, and $25 Gift Card to Best Buy

Morningstar Balloons and All Seasons Resort- Daren & Angie Wilde & Pat Burrus-2 Hour Hot Air Balloon Ride and 1 Nights Stay at All Seasons Resort, Park City

4 Misc. Avon Baskets- Silvia Salas

Flemings- Christopher Cox- $75 Gift Card

Misc. Knitted Items- Sue Rassmussen

Nail Expressions-Sandee Barrows- $45 Worth Nail Services

Momentum Climbing Gym- Chris McFarland- 2 All Day Climbing Passes

Carvers Steakhouse and Hampton Inn- Allie & Adriana Cortes- $100 Gift Card to Carvers & Nights Stay at Hampton Inn

NIMA-Natalie & Jaimie-$35 In Spa Services

Porcupine Grill- Tyne Hennessy-$40 Gift Card

The Dodo Restaraunt- Tyne Hennessy- $40 Gift Card

Hale Center Theatre-Ashley Dean- 10 Show Tickets

Cottonwood Heights Recreation Center-Bart Hopkin- 3 Activity Passes Good for up to 6 People

Chanel Sunglasses- Hidden Valley Eye Care

Red Cliffs Lodge, Moab-Judy Bane- Free Nights Stay

REAL Salt Lake- Cody Despain- 4 Game Vouchers

Shannon Clawson- Free Fitness Training Session

Mary Kay Gift Basket- Kandis Schwartz

Darla Evanson-Catering for 500 Mini Cupcakes

Noodles & Company Ft Union- Ashley Marietti- 4 Tour of the World Experiences for up to 6 people

7 Vintage Collectors Edition Barbie Dolls

Oceanic Digital Underwater MP3 Music System- James Farrell

Famous Dave's BBQ-Paula Behnmiller- All American Feast Certificate up to 4 people

Happenings Book- Kim and Andrea Nelson

Texas Roadhouse- Sammy- 2 Gift Baskets with Free Dinner, Sauce, Glass Boot and Peanuts

Origami Owl Custom Charlee Locket-Lauren Coughlan

Homemade Quilt- Diane Hamilton

 

Last, but not least, a thank you to all our vendors coming to participate tomorrow!

All Occasions Photo Booths
Chick-Fil-A
Discovery Toys
Fun Face Painting
Glitter Tattoos
ItWorks Wraps
Mary Kay
Modern Display
The Neuro Clinic
Padicakes
Pampered Chef
Part of Your World Parties
Shawna Geertsen
Usborn Books
Perfectly Posh/ Pink Zebra
 

Annual Batten Conference

We wanted to give you a brief update from the Annual Batten Conference in Nashville.  We had an amazing time meeting and connecting with families that are living with this horrible disease and taking over our children's lives. 

When we went, we thought Charlee was already so far gone.  With her already losing most of her sight, mobility, communication and now experiencing worsening seizures...we thought our girl was pretty bad off.  The truth is she still has A LOT of life left in her and we all need to take advantage of every moment we can, before it's too late!  While we were there, Charlee started doing things she hasn't done in months.  She said Jericho's name.  She was walking with support.  She was happy, laughing and even trying to dance!  

We all need to capitalize on every single moment we have with her.  We want you to be a part of Charlee's precious life!  I don't want any of us to have regrets of not taking time with her while she can still interact.  She has taught me so much and I am beyond blessed to be her mother.  I know sometimes people don't know what to say, so they don't say anything.  We saw a quote at the conference that I wanted to share "The only thing scarier for families than facing Batten Disease is feeling alone."  I also know some are afraid of getting too close because it will hurt too bad when she gets called home.  Please don't let this keep you away.  We are not asking you to come take her...we are asking you come visit, spend time with her, enjoy her laughter, smiles and sweet spirit.  I know she will touch you and inspire you like she does me every day!

We wanted to share this with you because we love you all so much and we don't want there to be any regrets when she is gone.

All our love,

Catrina & Jeff

An Angel's Voice

Last week, Charlee and her family had the chance to travel to Nashville for the Batten Disease National Conference. Charlee had a great time, made new friends, and did a couple things she hasn't done in months! Like saying her brother's name and dancing!!! You can see these little miracles in the videos below.

More details on the conference will be coming soon.

Take Me Out To The Ballgame!

Today we have a special opportunity for you to win an awesome night out with your family, best friend, date or anyone else while making a difference in the life of precious Charlee and her family.

Up for grabs: 

Suite seat tickets to the Salt Lake Bees game August 16 at 7:05pm. The tickets include parking a free food! An awesome evening with all your bases covered (pun intended) and you can still be doing good in the world? Sign us up!!!

We have up to 10 tickets available and will be offering them to you silent auction style. The bidding will start at  $20 per ticket, so you may just score an amazing deal for watching the game from a suite at Spring Mobile Ballpark.

What you do:

Fill out the form below with your highest bid and the number of tickets you want. This auction will stay open until Thursday August 1 at noon MT. We will notify the winners and send out the tickets by Friday August 2!

Good luck!

photo via

 

*AUCTION HAS ENDED*

Buy the Charlee's Angels Tee Shirt

Want to show you're one of Charlee's Angels? Buy the Charlee's Angels tee shirt to wear at our race or ride, or anytime to show your support. The shirt features a purple (her favorite color) heart with wings on the back, and "Charlee's Angels" on the front. Charlee has one that says "I'm Charlee and these are my angels."

Shirts are available in Adult sizes Small to 4XL, and children's sizes S (2-4), M (6-8), and L (10-12). Adult shirts are $20 and kids' are $15.

And of course, proceeds from your new shirt will go to help Charlee and her family. Purchase below or in the side bar.

Sizes

Adult S $20.00 USD Adult M $20.00 USD Adult L $20.00 USD Adult XL $20.00 USD Adult 2XL $20.00 USD Adult 3XL $20.00 USD Adult 4XL $20.00 USD Kids S (2-4) $15.00 USD Kids M (6-8) $15.00 USD Kids L (10-12) $15.00 USD

Front

Back

Charlee and her family of Angels

Riding Angels

Announcing... the Charlee's Angels Poker Run/Fundraiser Ride 'n Cruise! This motorcycle ride event will be Sunday August 25, and is sure to be a ton of fun! Click the images below to view the full-sized flier and map. See you there!