Tara Skirzenski, Patti DeVito and Tricia Munley are three (not very athletic) women, yet they will particpate in two (for Tara, three!) marathons between January and June.
WHY???
100,000 Reasons. Here are two:
Meadow is five years old. She has Neurofibromatosis 1. This is part of the e-mail her mom recently sent to up-date friends and family: "Let me first say that this has been the longest 3 months ever. It was spent with a lot of sleepless nights, worry, stress and a bunch of emotions that has not been fun. Meadow had her MRI's on Friday after a night spent in the hospital where she received a ten hour tube feed of blueberry juice contrast for part of her MRI. She cried most of the night and was very unhappy. So we have the results of her MRI. Here is the best part....that Meadow's plexiform (a type of tumor) in her neck is STABLE!!!!!!!! So I am still floating on air (or maybe being carried by angels) and Tim and I could not be happier. So for now her tumor has not grown and it is still inoperable but that was some great news. No chemo for now." from an e-mail sent by Lisa, Meadow's Mom, October 10, 2005
Now, imagine writing this about your little sister.
Bernadette is 37. She is Tara's sister, known as "Aunt Cookie" to Tara's children. She has Neurofibromatosis II. In January 2005 she had her 21st operation to battle tumors growing on her spine and brain that are causing seizures, deafness and chronic pain, confining her to a wheelchair at the age of 34. It's hard to type, it's harder to watch. Bern makes it easier for all of us. She is a person like you've never met before. She is positive. She is funny. Despite all her physical issues, she helps take care of people around her, finding clothes for the homeless, teaching children compassion and inclusion, raising money for research and more.
Every night, Tara's kids, ages 5 and 7, pray that God will cure their Aunt Cookie. They want her to walk, and hear and be free of pain. But they understand that this is the way it is. Aunt Cookie is fun. She has control. They love her. She is an inspiration.
We could fill this page and many more with the names of friends and family who live with NF, a relatively unknown genetic disorder every day.
Every case is different. It is unpredictible. It is ever-changing.
It is part of our lives.
We want to change that. We want to end it. We are Racing for NF Research.
PLEASE CLICK ON THE LINK BELOW TO SPONSOR US.
THE FACTS ON NF: ·NF strikes one in every 4,000 babies born.
·Half of all cases of NF arise in families with no history of the disorder.
·It is more prevalent than cystic fibrosis, Tay Sach's disease, Huntington's disease, inherited muscular dystrophy, and many other well-known genetic diseases.
·Neurofibromatosis causes tumors to form on nerves anywhere in the body, including the brain and spinal cord.
·It can lead to a variety of serious complications including blindness, deafness, loss of limbs, disfigurement, chronic pain, learning disabilities, cardiovascular defects, and cancer.
The disorder places an especially heavy burden on children. Medical complications from NF can arise at any age, even among very young children, who often require major surgery year after year to remove persistent NF tumors. Roughly half of all children with NF have learning disabilities requiring special education, and many experience speech or motor deficits requiring therapy.
PLEASE HELP SOLVE THE NF PUZZLE BY GIVING TO NF RESEARCH. SPONSOR US NOW!!!
If you'd rather send a donation in the mail: Make your check payable to Children's Tumor Foundation and note that it is to sponsor Tara Skirzenski, Tricia Munley or Patti DeVito #MS-456-06 Mail to: The Children's Tumor Foundation 95 Pine Street 16th Floor New York, NY 10005 With Thanks, Tara, Patti, and Tricia