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12 donations

This fundraiser ended on 09/30/12

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The Heidi's Song committee are committed to helping Heidi and her family in her fight with NF2. Please show your support!

At first Heidi thought she had tinitis, a common affliction among musicians, but audiology and MRI results confirmed her doctor’s suspicions and in 2009, just two weeks before Christmas, Heidi was diagnosed with NF2*. In March of 2010, Heidi underwent surgery to remove the tumors from the right side of her brain. Because the NF2 tumors literally grew out of Heidi’s nerves, neurologists had to remove the band of nerves that control hearing and balance. As a result, Heidi was left completely deaf on her right side and had severe balance problems. Months of physical therapy followed and a high-tech hearing aid was fitted to help Heidi hear through the tumors that were discovered on the left side of her brain. Doctors also discovered that Heidi had several tumors along her spine and several on the top of her skull. Heidi was forced to resign from her position as an assistant manager for a major retailer because she could no longer assist staff and customers, causing financial hardship for her family.
In October 2011, Heidi told her doctor that the pain in her back was getting worse and she wasn’t sleeping. Pain medication left her sleepy and depressed and the steroids she was put on caused a significant weight gain, but Heidi was happy and relieved that no new tumors were discovered.
Much to Heidi’s and her family’s dismay, an error had occurred at the October doctor appointment and it wasn’t until March 2012, that a follow-up MRI revealed that Heidi had 13 additional tumors on her brain and many more on her spinal column.
Heidi is now more than 80% deaf on her left side, even with the hearing aid. She is in pain most of the time and suffers from severe headaches. She has sought out holistic healers, but the relief has only been temporary. Heidi’s doctors have agreed that she is now a candidate for a cochlear implant and another surgery is scheduled for the end of September. Heidi says that her biggest regret is not being able to hear her children’s laughter or the sound of music. For a musician who has been playing guitar since a very young age, it has been torture not being able to hear the music she loves. But, Heidi is determined to continue playing her guitar and to try and teach deaf children to play and appreciate music the way she does.
It is the financial burden hanging over her and her family that we are trying to relieve and for that reason several of Heidi’s friends and family got together and formed the “Heidi’s Song” Committee, in the hopes of raising money to help alleviate some of the bills that insurance does not cover. Heidi has requested that a portion of all donated funds be allocated to Advocure, NF2 advocates for a cure. 15% of all donations will go directly to Advocure.



*Neurofibromatosis type 2 (also known as NF2) is distinguished by multiple brain and spinal tumors, commonly causing deafness, severe balance problems, facial nerve paralysis, and also sometimes spinal cord compression, swallowing difficulties, and loss of mobility. Optic nerve tumors, certain types of cataracts, and eye function complications may also cause loss of vision. For more information, go to: http://www.advocurenf2.org/
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