Showing posts with label kids cancer. Show all posts
Showing posts with label kids cancer. Show all posts
Tuesday, March 19, 2013
"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
Wednesday, February 27, 2013
ELLA'S FIRST BIG EVENT! MAY 18TH, 2013
MAKE NF DIsappear...Laughing for a Cure!
What a fantastic line-up for a great cause!!! Help Ella
on her mission to cure NF, spread awareness, and help others along the way. Must
be 21.
** Cash Bar ** Basket
Raffle **
Tickets are $35 per person
and can be purchased here! (top right of this page)
When ordering, please indicate who is in your party
so we can seat you together!
Tickets will be reserved upon payment and
will be held as "Will Call" at the event.
If you can't make it to the event, but would like to donate,
Please use the "To Donate" button on the right.
When ordering, please indicate who is in your party
so we can seat you together!
If you can't make it to the event, but would like to donate,
Please use the "To Donate" button on the right.
Thank you!!!
WHERE: Masso's Columbus Mannor 1351 N Black Horse Pike, Williamstown, NJ
WHEN: Saturday, May 18th, 2013, 6pm-11pm
Questions? Comment below, or email hopeforella@gmail.com
May 4, 2013 quick update
Here are 2 paypal screen pix of a purchase, to try and help anyone having a hard time buying tickets.
May 4, 2013 quick update
Here are 2 paypal screen pix of a purchase, to try and help anyone having a hard time buying tickets.
 |
| This is the "landing page" after you click to purchase tickets. Here, you will enter how many tickets you want to buy (quantity), then choose either "check out" or "check out with PayPal". NOTE: you do NOT need to have a paypal account. When you get to the next page, of which I did not upload the screenshot, sorry, you will see "don't have a paypal account" link or button you can choose that one. |
 |
| Here is the "pay now" page. See just under the blacked out shipping address, it says "add special instruction to the seller"? You will click the word "Add", that is where you would type to tell us who you'd like to be seated with, or any other instructions/messages you want to send. Hope this helps!! ♥ |
Tuesday, February 26, 2013
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”. 
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”.
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