Showing posts with label genetic disorders. Show all posts
Showing posts with label genetic disorders. 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.
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Twitter @HopeforElla or use #HopeforElla
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”. Monday, February 25, 2013
The Havoc of Neurofibromatosis
Neurofibromatosis has seemingly limitless effects neurofibromatosis on the body. As vast as the possible effects, shown on the diagram, may seem they are only some of what may happen. This disorder moves in stealth mode and can appear ANYWHERE in the body, at any time, in many forms. More research is not only needed, it is NECESSARY. Doctors can only treat the symptoms and effects of neurofibromatosis, they can not treat the disorder itself. Hope for Ella will do everything we can to push research towards specific treatment and, hopefully, a cure.
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