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| Joseph Anania's Fundraising Page |
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| Joe was diagnosed with Neurofibromatosis Type 2 (NF2) when he was 14 years old. Joe’s first symptom, which we didn’t realized at the time might be related, was that his right eye didn’t develop as a baby and was removed when he was one year old. During his first 14 years he functioned normally, compensating for his monocular vision very successfully. At 14 he told me that he wasn’t able to move his left eye out. His ophthalmologist at the time ordered an MRI and it was discovered that he had a large tumor in his brain. By the time his surgery was scheduled at UCLA he lost the visual field in his left eye (the right one now a prosthesis) leaving him with about 33% of his vision. The surgery had tragic results. The very vascular tumor took 12 hours to remove and the trauma to his brain resulted in his being left half-paralyzed on his left side of which his hand movement has not returned, here 14 years later. At that time he was diagnosed with NF2 which is a disease that grows tumors in the brain and spinal cord. A year after this initial brain surgery Joe experienced difficulty swallowing. A MRI revealed that a cyst had grown in a brain stem tumor. Two unsuccessful surgeries at UCLA didn’t reduce the swelling. It took a trip to New York, and the renowned pediatric neurosurgeon, Dr. Fred Epstein to remove the cyst and half of the brain stem tumor. Since those early surgeries he’s had many surgeries to correct symptoms for functions that we all take for granted. All of these were major surgeries, never returning Joe to a sense of normality but rather aiding in the conditions not worsening. Today Joe continues to have a serious balance problem due to the removal of acoustic tumors in both ears, and scar tissue in his brain left from that initial surgery to remove the brain tumor. After gamma knife surgery in November 2006 to stop the growth of a tumor on his facial nerve growing into his brain, he now has lost his hearing almost completely and his balance issues have worsened so that he can no longer walk independently. He continues to be dedicated to working out at the gym, his father assisting him with going from one exercise machine to another, and working with a personal trainer. We are now in the process of learning American Sign Language to help us communicate better which lately has become very problematic and frustrating. Through all this he has managed to graduate from high school (1998) and college (2006). He’s an inspiration to us and to the many who know him, and you can well imagine he struggles with depression. Joe now is 29 years old, and coping successfully with NF2 is Joe’s only hope, as well as ours as a family.
The Children’s Tumor Foundation (CTF) brings hope to Joe, our family, and other NF families in the Southern California area. Neurofibromatosis affects 1 in every 2500 live births. The CTF has been working to fund clinical trials to find a cure for this deadly disorder. Since 1978, Children’s Tumor Foundation (CTF), a 501(c)(3) public charity, has been the leading not-for-profit organization dedicated to improving the health and well being of more than 100,000 Americans living with Neurofibromatosis (NF). NF causes tumors to form on nerves anywhere in the body, including the brain and spinal cord. It can lead to loss of vision and hearing, disfigurement, loss of limbs, skeletal defects, and forms of cancer. Half of all children with NF have learning disabilities and require special education (not Joe). NF affects children regardless of gender, race or ethnic origin. Half of all cases occur as a result of a “spontaneous genetic mutation” in families with no history of the disorder like ours. CTF offers hope and a vital sense of community connection for children with NF, through programs that bring young people together and help them cope. Thanks for your generosity and joining us in the “Race4Research” for neurofibromatosis!
Marilyn Anania, Mother of Joe Anania |
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Total Donations Collected:$625.00
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| Goal: $1,000 |
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Sorry.
Fundraising has ended.
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