We've decided to add this link to our Fundraising for the Mom's Day Run 2012. So that Participants can donate directly to VHL instead of registering for the run.
Thank you in advance for all of your love and support.
We lost our beloved mother, Marianne on August 2, 2010 to VHL. Mom didn't know she had the brain tumor.
She had lost her sight to VHL when she was 25 years old and had three small children. In 2008 she had pneumonia and had a slow recovery...losing her balance and falling. She seemed to get better...then the falling started again. Ten days before her birthday, I asked her if she had plans for her birthday...she gave me an odd answer. She said she was going out of town and when I asked where to...she said next door. When I asked her again...she didn't seem to realize what she had just said...We started watching her more carefully and all came together for her birthday on July 31, 2010. She was surrounded by her children, grand children and great grand children.
She wasn't speaking...we'd ask questions, she'd acknowledge us but couldn't verbalize her thoughts. At this point we thought she had possibly had a mild stroke. The next day she was taken to the emergency room, where they found a tumor on her brain stem. She passed away during surgery to remove the tumor.
We miss her terribly...and wish to raise money and awareness about this disease.
Our entire family has been affected by VHL. Right now there are several diagnosed relatives, living with the effects of VHL. Retinal tumors, brain tumors, kidney and pancreatic cysts. Each day is a struggle to cope with these issues, regular scans will keep us updated on our prognosis and medical plan...but it's always lurking there. It's a scary thing to deal with.
Shana (age 35), Davonte (age 16), Steve (age 51), Adam (age 29), my cousin Amy and her son (I'm not sure about their ages), me...and others on my mother's paternal side.
Shana is my daughter, she is a mother to two beautiful teens. She has had 6 brain surgeries to date and they are currently watching 5 more. This is a terrifying time for her...since her grandmother passed away a few months ago from the same type of tumor.
UPDATE: Shana just had another brain surgery to remove a tumor and a cyst caused by VHL on Monday, April 25, 2011. She is bound and determined to attend our Mom's Day Run on Mother's Day even if she is in a wheel chair.
Shana's son also has VHL and she works with his doctors to get regular scans. He had surgery in 2007 to remove a Pheochromocytoma (which is a rare type of tumor associated with VHL)...during the surgery they had to remove one of his adrenal glands. He will be scanned yearly for the rest of his life.
Please donate whatever you can...we know times are hard right now, but every little bit helps.
Thank you so much,
The family of Shana and Marianne
*Thank you for visiting my Personal Fundraising Page. Donating through this site is simple, fast and totally secure. It is also the most efficient way to make a contribution to our fundraising efforts. Many thanks for your support.
SEE INFORMATION BELOW REGARDING VHL (or visit www.vhl.org):
What is Von Hippel-Lindau Disease (VHL)?
von Hippel-Lindau disease (VHL) is a rare, genetic multi-system disorder characterized by the abnormal growth of tumors in certain parts of the body. The tumors of the central nervous system (CNS) are benign and are comprised of a nest of blood vessels and are called hemangioblastomas. Hemangioblastomas may develop in the brain, the retina of the eyes, and other areas of the nervous system. Other types of tumors develop in the adrenal glands, the kidneys, or the pancreas. Symptoms of VHL vary among patients and depend on the size and location of the tumors. Symptoms may include headaches, problems with balance and walking, dizziness, weakness of the limbs, vision problems, and high blood pressure. Cysts (fluid-filled sacs) and/or tumors (benign or cancerous) may develop around the hemangioblastomas and cause the symptoms listed above. Individuals with VHL are also at a higher risk than normal for certain types of cancer, especially kidney cancer.
The prognosis for patients with VHL depends on the location and complications of the tumors. Untreated, VHL may result in blindness and/or permanent brain damage. With early detection and treatment the prognosis is significantly improved. Death is usually caused by complications of brain tumors or kidney cancer.
Treatment for VHL varies according to the location and size of the tumor and its associated cyst. In general, the objective of treatment is to treat the growths when they are causing symptoms but while they are still small so that they do not cause permanent problems by putting pressure on the brain or spine, blocking the flow of cerebrospinal fluid in the nervous system, or impairing vision. Treatment of most cases of VHL usually involves surgery to remove the tumors before they become harmful. Certain tumors can be treated with focused high-dose irradiation. Individuals with VHL need careful monitoring by a physician and/or medical team familiar with the disorder.