(Editor's Note: The following was provided by the Music Academy of Garden City.)
Each year throughout October, Music Academy of Garden City (MAGC) students are encouraged to "practice with a purpose." For every hour of practice students log, the Music Academy donates $1 to charity.
This year, the money collected will go to the International Chiari Association, to support research and help pay for treatment.
Last year, Music Academy student Julia Piotrowski was diagnosed with Chiari 1 and is currently recovering from surgery.
The letter below was written by Julia's mom, Nicole, and not only tells
the story of an extremely brave young lady, but also serves as a
reminder that supporting research of this kind makes a difference in the lives of real people - our neighbors, friends and family.
JULIA'S JOURNEY WITH CHIARI: A MESSAGE FROM HER MOM
Julia Piotrowski is 10 years old and is currently in 5th grade at
Saint Anne's School in Garden City. In February 2012, Julia was rushed
to the Emergency Room and admitted for fainting, heart palpitations and
serve headaches. As a parent, this is your worst nightmare. After being
tested for everything from heart disease to seizure disorder, Julia was
diagnosed with a Chiari 1 Brain Malformation.
Immediate brain surgery
was necessary to stop the rapid progression of her symptoms. A Chiari
Malformation is when the lower portion of your brain protrudes and
pushes into the spinal canal causing extreme pressure and blockage of
spinal fluid throughout the brain and spinal column. If left untreated
it could cause paralysis. Julia had her surgery in May at NYU in
Manhattan and is recovering. She is doing great!
Chiari 1 is a rare neurological disorder and for the most part
is widely misunderstood and misdiagnosed. Because of its obscurity many
times the symptoms do not point doctors to a Chiari 1 diagnosis.
The International Chiari Association is one of the few places that
has information available and resources. Finding a pediatric
neurosurgeon that we were comfortable with and is competent to perform
this delicate operation was difficult. That is where the ICA helped us
tremendously. The ICA and the information they provided were the sole
reason we found Jeffrey Wisoff, MD., director of Pediatric Neurosurgery at NYU Langone. What a blessing this was!
When a child is sick, the only thing a parent can do for them
is to get them the best care possible. When your child has a rare
condition, like Chiari 1, your main goal is to do everything for them.
Understanding what the best options are to treat it and finding the
appropriate people to care for them is paramount. We have been very
fortunate to have the right people to help us care for Julia. Her family and friends have surrounded us with unconditional love and support. We
would like to donate to ICA to help ease the burden for other parents
who have to start this difficult journey to help their child.
Click here to see "Julia's Chiari Battle" video slideshow.
Thank you to all at the MAGC for your love and support. Julia cannot wait until she can come back to continue her voice lessons! -Nicole Piotrowski, Julia's mom
Please encourage your child to spend more time practicing this month than they may normally do, since each hour they practice will support a great cause. As an extra incentive, the Music Academy student who practices the most will receive a $50 Simon Mall gift card.
Parents, please note that you must sign your child's practice log in order for them to be eligible to win.