GiveForward Thursday.

Once again this week, I am cheating. My cousin Jen's writing is so much nicer then mine and describe it so much better that I thought it would make more sense for you to read what she's written. So please just take a few moments out of your day and read this. And maybe even pass it on :)

From Jen @ The Hansen 4:

"Did you know that brain stem tumors account for 10 percent of pediatric brain tumors? The peak incidence is between the ages of 5 and 10.

Today, I'm going to tell you about a type of brain stem tumor called a Pontine Glioma. Pontine brain stem tumors affect crainial nerves that supply the muscles of the eye and face, and the muscle involved in swallowing. The symptoms include: double vision, the inability to close eyelids completely, the dropping of one side of the face, and difficulty chewing and swallowing. The tumor also affects "long tracks" of the brain, which results in: weakness of the arms or legs, difficulty with speech, or difficulty walking.

The patients symptoms often improve dramatically during or after six weeks of irradiation. Unfortunently, problems recur after 6 to 9 months, and progress rapidly. Survival past 12-14 months is uncommon.

Radiation therapy is the main treatment approach since these types of tumors are inoperable. To improve the outcome of pontine gliomas, researchers are studying drugs that may enhance the effect of radiation therapy.


Now it's time to introduce you to a 4 year old little girl who was diagnosed with a pontine glioma, low grade, on Halloween of this year. Her name is Brynlin Sanders and she has a 4cm inoperable pontine glioma on her brain stem. Brynlin is receiving treatments from the Burzynski Clinic in Houston, TX but is from Wichita, KS. The money that is being donated to Brylin Sanders Medical fund is being used to offset the cost of medical expenses and, since she is being seen in TX, travel expenses.

Recently an update about Brynlin was posted on her fundraising page saying
Brynlin Sanders Medical Fund updates.Dec 17th 2011

December 17th, 2011

It has been so nice to be home the last couple of days! Bryn was ready to be home and she said she didn't want to stay in a hotel, so we were able to drive all the way home without staying overnight somewhere in between. We made it home around midnight on Wednesday.

Bryn has also started her new diet that the nutritionist suggested we put her on. We were able to follow it somewhat while we were in Texas, but now that we are home and not eating out so much we will have to stick to it. This means we will be making a lot of our food from scratch and leaving out a lot of the good stuff! Grandma Sanders brought her some organic oatmeal today. I made it for her and she ate a little bit of it. Later she said she was hungry again, so after she said no to all of my other ideas I asked her if she wanted some more oatmeal. She said, "No I don't like that oatmeal Grandma brought, it doesn't taste." Well at least she's honest! We did however add some cinnamon to it and she decided it wasn't too bad.

Medical Fundaising Made Simple

As you can see, the goal is to raise $50,000 to help offset the many expenses coming this families way in the future, and only 5 percent of the goal has been met. Please visit Brylin's page and donate if you can... remember, even $5 helps. If you can't leave a donation, why not leave a hug?!?! Let the family know your pulling for them. You can also look for more updates of Brynlin by clicking HERE and clicking the updates tab"

GiveForward Thursdays

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.

Medical Fundaising Made Simple

Medical Fundaising Made Simple

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."

Long time, No blog.

It seems that things have been a little hectic lately. With the holidays and everything else I just haven't had the chance to blog.
But in all the time since my last blog not a lot has happened wedding wise. But one major thing has happened and that is Josh has finally found out where he will be stationed come July. We will be living in Virginia Beach, VA. I am excited and nervous. It is going to be a big change for me but from visiting Josh I know my way around down there. Also it's only about 9 hours from my family so that will be nice.
The wedding is coming up quickly. We are just over 5 months away and I couldn't be more excited! There is still a lot to be done (mainly paying things off) but for the most part we're done. Also yesterday I was able to go pick up my wedding dress and I am soooo happy! I love it so much! Now I just need to find shoes so I can get the alterations done. I've decided I want fun shoes, nobody is going to really see my shoes so why not.