GiveForward is a pretty amazing website. My family used it a lot when my cousins daughter Aylianna was diagnosed with Biliary Atresia and when she later had to have a liver transplant. It is a safe and easy to use fundraising website that helps people in any situations raise money.
That being said my cousin Jennifer has decided to start a new "blog tradition" so to speak with GiveForward Thursdays. Each Week she features a new fundraiser that is on GiveForward to help a family the way her family has been helped by so many people. All I ask is to simply take the time to read Jen's blog (linked above) and share this with other people. But just in case you don't click the link above I have simply posted her post below. Please read and realize that any little bit helps. Even if it's just to help get the word out!
Following post courtesy of Jennifer over at The Hansen 4.
"I've decided to start a new weekly posting called GiveForward Thursday.
The reason being, I've been where a lot of these people are... needing
money to help cover medical expenses and living costs while traveling to
different hospitals and living out of a suitcase, and to cover costs
that insurance doesn't cover. It's a great feeling to see all the
support given by friends, family, and complete strangers when going
through something like this. It's not always easy to ask for help, but
GiveForward helps make that a little bit easier. GiveForward
is a legitimate fundraising site and your donations are tax deductible.
Remember when your reading about these different people and what their
going through that even the smallest donation, $5, makes a difference.
So, to launch off GiveForward Thursday, I will be telling you a little about Niemann Pick Disease Type C (NPC)
NPC is a rare and extremely variable pediatric neurological disorder
causing progressive deterioration of the nervous systom. There are only
about 500 people diagnosed with this disease worldwide. NPC interferes
with a childs ability to metabolize cholesterol within the cell. When
large amounts of cholesterol accumulate within the liver, spleen, and
brain it leads to a series of neurological problems that are utimately
fatal.
There are no treatments for NPC, but there are supportive therapies.
Therapies include medication to control seizures, abnormal posturing of
limbs and tremors. Physical, occupational, and speech therapy are also
used.
A low cholesterol diet and cholesterol lowering medications do not seem
to influence the course of the disease and the life expectancy of a
child with NPC is less than 20 years of age.
Symptoms include:
Enlarged liver or spleen
liver failure without neurological symptoms
difficulties with speech
development of dementia
seizures
jaundice at birth
early development of neurological problems
low muscle tone
delayed motor development before age 2
sudden loss of muscle strength
and progessive liver failure beginning in infancy
Have I got your attention? Because now I'm going to introduce you to Kamryn.
Kamryn Jolie Brumbeloe was born on July 21, 2011. At Kamryn’s two month
doctor visit, she was diagnosed with an enlarged spleen and liver. She
was sent to the Children’s Hospital Emergency Room that day. On November
29th, she was given the horrific diagnosis of Niemann Pick Type C
Disease.
Recently, Kamryn has been accepted as a patient for Dr. Mark Patterson
at the Mayo Clinic. He is very experienced with NPC. Unfortunently,
Kamryn's insurance is not accepted by the Mayo Clinic, which is going to
make the out of pocket cost phenomenal.
The fundraisers goal is $20,000 and only a mere 6% of that goal has been
met. This fundraiser goes on until February 14, 2012, but wouldn't it
be a wonderful Christmas present to Kamryn if we could help make a dent
in that goal? Even a $5 dollar donation can help this precious baby girl
get the help she needs to keep living.
Want to know more about how Kamryn is doing? Her mom started a blog called The Brumbeloe Family where you can read more specifically about Kamryn's battle with NPC."
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