Thursday, January 19, 2012

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!


  1. What an amazing mother to donate all of those items to the family needing it. I remember that story and remember the picture of all that was donated!! Heidi you are a superstar! I will be here Saturday night to help ensure that you and baby Riley do not have to pay a dime for your wonerful vacation!!! Praying for Baby Riley and moms Sanity. Moms always need a prayer as well as a mother of an Autistic child I know we need to keep our sanity!!!! Come on Frikes lets show Heidi what we are made of we can do this

  2. Heidi and Riley,
    My heart goes out to you two, and I so hope that a wish fulfilled brings that shining smile of hers out all day long on that special day! Heidi, you are such a beacon of generosity and fortitude. I hope that your loved ones surround you on a daily basis to hold you up as you champion for your child. You are a rare kind of person!
    Honoring you and sending love and support to little Riley.

  3. My thoughts and prayers go out to the both of you. Riley, I hope you have the time of your life at disney world and it brings a smile to your beautiful face that stays with you and your mom forever! Heidi, you are the kind of mother that ever woman wants to be. You are an extroidinary women and mother! You and riley will be thought of dailey love and prayers to you all.

  4. My heart goes out to Riley & her mom. I was diagnosed with JRA(Juvenile Rheumatoid Arthritis) a month after I turned 15, & have now had it for over 17yrs. I've had 18 surgeries alone just for the JRA & two years ago I was diagnosed with CVID(Common Variable Immune Deficiency) after having a rare pneumonia bug for over three months that almost killed me twice, I did however lose my baby that I was 12wks. pregnant with. I became pregnant with our 2nd child when my daughter was only six months old & had the pneumonia for basically the entire pregnancy & on October 12th, 2009 my baby paid the price for me being so very ill. I was later diagnosed with the CVID after having the pneumonia bug move to my knee replacement on two different occasions. Basically I was in hell for an entire year & remember very little of my daughter's 1st 18 months of life b/c of all the pain meds. Anyway, I feel Riley's pain b/c I too have to now have monthly IvIg treatments to keep me from getting a simple cold that could quickly turn into pneumonia or worse & kill me. I didn't get to see your post on Facebook about the one day bracelet fundraiser, but I would like to know if their is anything I could do to help or where I could go to directly donate to her cause. Even though I haven't been through nearly the amount of struggles this sweet little girl has I understand how difficult & dangerous immune deficiencies diseases are. Also as a mother I could not imagine having to have my daughter endure the health issues I & Riley have had to endure, so I am very eager to help.

  5. This is a great post thanks for writing it.