Benefit DOTD – Riley’s Disney Dream

Before her second birthday comes this June, these will be the things that a young and beautiful little girl named Riley will have faced head-on:

Chondrodysplasia Punctata- a rare genetic disorder that affects her bones and lungs

IGG Deficiency- an immune deficiency that makes it hard for her to fight infection

Neutropenia- a blood disorder that also makes infections difficult to treat

ALL- Acute Lymphoblastic Leukemia (beginning stages)

30% hearing loss- tubes placed in both ears

Malformed tear ducts- surgically fixed in March 2011

Right tibia/fibula bowing- unsuccessful surgery on October 17th; doctors will revisit the issue in March

Langer Mesomelic Dwarfism

Shwachman Diamond Syndrome- affects Riley’s liver and kidneys and how she processes foods

Riley has endured in less than a thousand days on earth more than what most people go through in a lifetime. She recently had a chemotherapy treatment that was not tolerated well, and was deemed ineligible for last resort clinical trials because she did not meet the criteria. For now, her parents and doctors have decided to work on strengthening her immune system. Riley already receives IVIG treatments and will soon begin G-CSF treatments to combat her illnesses and help give her a fighting chance. But the most difficult journey is ahead; the long, helpless road of waiting. Waiting for solutions to arise, waiting for answers that may never come, waiting for results to show what is and isn’t working… And yet through it all, she has a beautiful smile and vibrant personality. Not to mention a mother whose inspiring acts have touched the lives of those closest to us on our business page, our Frikes.

Riley’s mother, fellow Frike Heidi, generously donated this large care package to a family in need after reading their story on our Facebook page, all while knowing her daughter was going through everything mentioned above. Heidi focused on what she could do for others in their time of need and reached out to give, all while going through her own personal struggles with her precious daughter. What an incredible woman and mother!

And now it’s time for us to help her, and Riley.

Riley is too young to qualify for the Make-A-Wish program because she is not yet two-and-a-half years old. But she is not too young to enjoy a break from her constant treatments, doctor’s visits, surgeries, and most recently, her poorly tolerated chemotherapy treatment that was stopped early to allow her to rest. And another of our wonderful Frikes, Dana Zweibel, is able to help. Dana can provide the family with a Disney hotel room, dinner at Cinderella’s castle, and access to all of the magical moments within the gates of one of the happiest places on earth- Disney World. Thanks to an employee discount, Dana has generously volunteered to make this magical dream affordable. This is where you come in.

On Saturday evening at 8 PM EST, we will be hosting a Deal of the Day benefit bracelet sale on our Facebook fan page to raise money to make this trip cost-free for Heidi and Riley! All proceeds from the sales of bracelets on Saturday will be donated to this worthy cause. This is our chance to not only make a dream come true for a little girl going through some unimaginable medical challenges, but to show her mother that we love and appreciate her kind and generous participation as a Frike!

We ask that you please consider purchasing a bracelet, or sharing this blog or our Facebook page with others who may be interested in doing so. It is our goal to make this Deal of the Day sale as successful as possible to make this dream come true for Riley and her family. We can do this!!!

For those who may be interested in purchasing a bracelet, we as that you please only participate if you are able to send payment within 12 hours; benefit fundraisers are time-sensitive.

Please feel free to leave encouraging messages of love and support for Heidi and Riley below. And don’t forget to thank our wonderful Dana for her amazing role in this incredible dream!