Joining Us?

Isaac’s Celebration and Fundraiser to Cure Tay-Sachs is in less than 3 days! Have you bought your tickets yet? Follow the link on the main page of this site. Get $7 off each ticket when you click the box for add discount code and use 777 through Tuesday night at midnight.

Wondering about some of the prizes and raffle items? With your big winnings with your casino funny money, you have chances to win a vacation to Laughlin for 2 or one of 2 packages of 4 tickets to the Del Mar Horse Races. We have quite a few auction items including a basket of goodies and 3 class pass to OrangeTheory Fitness! You could win the opportunity to see what is helping keep Isaac’s Momma strong for the long haul. Read the latest blog post for more items.

We can’t wait to celebrate with you and thank you for your support! Please invite your friends and share with everyone!

Someone is ready for a good time!

Halloween 2017

Where have we been? Months and months without a post? My apologies! Please enjoy Isaac’s Halloween fun!

Isaac helped make his truck. Cardboard, duct tape, spray paint, construction paper, aluminum foil. Amazing what you can make at home!love visiting Dr. Steve and getting checked before a busy evening!Visiting our local Fire Department. They were busy so no picture with a big truck today.

Isaac met Santa and shared his Christmas Wishlist

Wondering what Isaac might like for Christmas? We’ve been asked a few times so thought we would share. 

A Cure for Tay-Sachs. And seizures. And all things fatal to children! Duh. A start?: CTSF.org We’d be pleased if you donated in Isaac’s honor. 

Clothes. He’s in a 5-6. He already has plenty of sweaters and jackets. Shirts long sleeve and short, comfy pants, a decent pair of jeans, or jammies are always great choices!

This Swing and possibly the insert: https://smile.amazon.com/gp/aw/d/B0018QEFRO/ref=aw_wl_ov_dp_1_1?colid=KOJ1P8RXCUA2&coliid=I3B058H4WMVVUJ

Toys that respond to sound or touch of easy to access buttons like: https://smile.amazon.com/gp/aw/d/B00BSWS8LM/ref=ox_sc_saved_image_8?ie=UTF8&psc=1&smid=ATVPDKIKX0DER

Isaac likes fun toys, music, lights and we are okay with that! 

Hand Santizer and Soaps. Can’t get enough of the smell good types since we use them allllllll the time, but don’t generally splurge on the fun stuff ourselves. 

Isaac went to see Santa yesterday but Santa didn’t share what else was on Isaac’s list. 

   
 
He did get a little photo bombing from a sneaky Gingerbread man!

   
 
And then we made ornaments!

   
Wishing you and yours and very Merry Christmas! 

4 years Post Transplant

Thankfully Isaac celebrated 4 years post cord blood transplant Wednesday. We are so blessed! Isaac is generally doing well with some milestones achieved and some mild set-backs. It is so crazy to look back at the beginning once in a while: http://www.caringbridge.org/visit/isaacsandoval/journal/index/0/0/asc
We won’t be able to do a fundraiser for CTSF and Isaac this fall (we are moving!), but are looking at February and a Bingo tournament currently. Please let us know if you have ideas or would like to help in anyway. We can’t wait to end this disease! Thank you all for your love and prayers!!!

   
     

Day + 1, 114: Happy Transplant Anniversary and Happy Birthday Party Isaac (Late Post)

Isaac had a wonderful transplant anniversary/birthday celebration!!! We really want to thank everyone who donated and those who were able to come out! That weekend brought our first rain in months, and lucky us it rained at night and then we had cooler days with nice big puffy clouds and sunshine. The park was a perfect size and set up. We had a fenced in athletic field behind us, a playground on one side and plenty of open grass. We also had a decent size tree from which to hang our Tiki Pinata which was quite a “Hit” and spilled toys and a little candy with appropriate coaxing.

Isaac wore his Halloween costume. He was dressed as a surfer. Originally he would’ve worn shorts, slippahs and an aloha shirt to go with his jeep and surfboard that fit so nicely on his wheelchair, but a surfer knows how to wear a hoodie and jeans on a cooler day!

Isaac had lots of friends come to help sing “Happy Birthday” and eat some cake but first they were treated to sound healing with Cat and her crystal bowls that resonated deep in your chest. Everyone could see which bowls Isaac liked over some of the other options. Isaac’s chiropractor Dr. Steve, his Ana Baniel Method therapist Margie Murnan and his teacher Mrs. Gay made it out too. We also got to visit with Gavin Marquez and his family for a little while too. Gavin is also bravely battling Tay-Sachs and he celebrated his 9th birthday this week! He is fighting the juvenile form of Tay-Sachs and his parents are hard at work keeping him strong! He looked so good and he seemed to enjoy some sound healing and aromatherapy too!

 

 

Thank you for your donations: Ageless and Beautiful, Flying Panther Tattoos, Dr. Steve Tullis, Margie Murnan, Bonny Rivera, Mr. and Mrs. Beasley, Mr. and Mrs. Camara, Stuart Ganz, secret cake maker and the Cure Tay-Sachs Foundation for helping us acquire autographed Charger’s memorabilia.

These donations and your generousity raised $3,000 towards Isaac’s therapy and healing expenses. We believe strongly in the mission of the Cure Tay-Sachs Foundation and sent 20% of Isaac’s celebration to them as we know one day, Tay-Sachs will not be a death sentence because the research was funded.

Winners:

Dan Fouts Helmet: Olivia

Philip Rivers Helmet: Foster Family

Dwight Freeney Football: Lorrie

Ageless and Beautiful Active Fx: Allison

Flying Panther Tattoos: Padaons

Dr. Steve Tullis: Allison

Bonny Rivera Quilt: Tino Rivera!!!

Coffee: Janet

Hawaiian Basket: Janet

Turtle: Denise

Fish: Liza

 

 

Isaac the surfer in his jeep.

Isaac the surfer in his jeep.

Grampy and Grammy Howard, Uncle Jon and Aunt Rita, Dad and Mommy, Isaac and Nicholas!

Grampy and Grammy Howard, Uncle Jon and Aunt Rita, Dad and Mommy, Isaac and Nicholas!

Crystal sound healing with Cat. Isaac loved the bowls and definitely indicated which ones he preferred!

Crystal sound healing with Cat. Isaac loved the bowls and definitely indicated which ones he preferred!

Raffle table!

Raffle table!

Gavin Marquez, just before his 9th birthday, fellow Tay-Sachs fighter! Dr. Eric Reed, fellow Tay-Sachs father, pediatrician and great human being. Jan and Ferd Marquez, devoted, sweet, powerful parents!

Gavin Marquez, just before his 9th birthday, fellow Tay-Sachs fighter! Dr. Eric Reed, fellow Tay-Sachs father, pediatrician and great human being. Jan and Ferd Marquez, devoted, sweet, powerful parents!

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Maddy and Liana getting some more fun out of Isaac's jeep.

Maddy and Liana getting some more fun out of Isaac’s jeep.

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Congratulations Olivia on winning the Dan Fouts autographed replica Charger's Helmet!

Congratulations Olivia on winning the Dan Fouts autographed replica Charger’s Helmet!

Congratulations Foster Family on winning the Philip River's autographed replica Charger's Football Helmet!

Congratulations Foster Family on winning the Philip River’s autographed replica Charger’s Football Helmet!

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Congratulations Padaons on winning the $300 Flying Panther Tattoos gift certificate!

Congratulations Padaons on winning the $300 Flying Panther Tattoos gift certificate!

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