Hope for Ella reached THREE THOUSAND LIKES!!

And I am happy to say the number keeps rising: the "likes" at this moment are 3,131. Can you believe it? Ella's fans are amazing and truly pulled out all the stops to share and persuade their facebook friends and family to go like Ella's page. I don't think we could have wrapped up Neurofibromatosis month any better than this. Here are Terri's words after logging onto the page yesterday, first in the morning (Thursday ended with just under 3000 likes on the page):

HOLY COW!!!! I just screamed out loud!!! Thank goodness Ella is at school. I want it to be a surprise!!!only 69 more to go!!! AMAZING!!!! What wonderful supporters Ella has!!! With you all in our corner how could we lose? YIPEE! Now i will have a smile on my face all day!!! Can't wait to see where we are this afternoon!!! Have an AWESOME DAY!!!

And then again in the early evening: 

I cannot believe it!!!!!!!!!!!!!!! I thought for sure when I got on here this evening that we might be almost at 3000 but WOW!!!! we are 100 over!!!! How stinking amazing!!! You all ROCK!!!! She is at dance right now and I can't wait to surprise her with the news!!!! Keep an eye out... this should be good!!! THANK YOU!!!!

Allow me to now show you what I know you've been waiting for....Ella's reaction!! (filmed and narrated by Mommy Terri <3 font="">

As always, THANK YOU for sharing however you are able, whether by HopeforElla on Facebook,

by the Hope for Ella Blog , by Tweeting #HopeforElla and/or following HopeforElla on Twitter, and any other creative ways you have shared--YOU are all helping change the future of those with Neurofibromatosis. Each one of you represents one more person that has heard the word neurofibromatosis. Through all of you and with Hope for Ella we will see changes in research of this genetic disorder!!

We are Hope for Ella

Mighty Hope for Ella,

We're Fighting for a Cure

'Til NF's NO MORE!

                     

                                            

"What is Neurofibromatosis?", a video

**Here is an updated form of the video, in its original form rather than the YouTube version.** A brief video explaining the very basics of this extremely complicated, volatile, and variable disorder, along with how you can help share and raise awareness! The song playing is "Bring on the Rain" by JoDee Messina w/Tim McGraw, available on iTunes. www.facebook.com/HopeforElla Twitter @HopeforElla or use #HopeforElla

Mommy Terri's Words

Every Tuesday, we'll have at least one blog post that is in Terri's words. Here is today's:

In May of 2011 our world was forever changed when our seemingly perfect five year old daughter, Ella, was diagnosed with Neurofibromatosis (NF). At first we could hardly pronounce it let alone understand what that one word would mean to our lives. Researching NF frightened us to our core. Words like vision loss, scoliosis, disfigurement, hearing loss, development delays, behavioral problems, tumors and cancer were all associated with that one diagnosis. And to top it off there is no treatment! No way for us to stop NF from taking its course with our precious baby. What challenges would it present for Ella? Would she have pain? What quality of life could we expect? These and a thousand other questions surround us daily.  We live each day to the fullest but always have in the back of our minds… what’s next?

It started with the diagnosis, then a myriad of appointments and tests, then learning about the growths in her brain, followed by a diagnosis of ADHD, vision loss and more. After about a year of close monitoring through MRI’s we received the news that no parent wants to hear… We have to start chemotherapy. The tumors were growing and we needed to take action. Through all the headaches, needle sticks, sedation, tests and challenges, Ella has remained positive. She wakes up everyday ready to take on the world. Ella helps the homeless after every Terrific Treatment Thursday. She plans to hold a community involvement event to make headbands and hats for those losing their hair. She wants to raise money for research to cure Neurofibromatosis. She wants to, in her own words, “change the world”. Ella is brave, strong and a true inspiration. She is a constant reminder of the meaning of the words generosity and hope. It is for that reason that we are faced with a new challenge making her foundation a success. In addition to all that Ella wants to do… this also makes us want to reach out to other families challenged by NF and create a place of community, awareness and information so that no other parent feels alone when they hear “We’re sorry… there’s nothing you can do”.