When Maddie was born, she had numerous "birthmarks", which she now has 40 of them all over her little body. They are called café au lait spots, and with this many doctors thought could be a sign of having a genetic mutation. Complications of this disorder include high blood pressure, vision problems and epilepsy. The doctors were able to diagnose that Maddie has Neurofibromatosis (NF1) and following an MRI on May 25th they confirmed that she has a tumor behind each eye and both tumors are cancerous. They cannot operate because Maddie would lose both of her eyes, so they are hoping treatment will shrink the tumors.
Maddie has had 6 treatments so far. She will have them once a week, for the next 1.5 years, 70 in total. They have put in a IVAD device so the chemo pumps directly onto her heart and then her heart distributes the chemo to her body. (Maddie knows this IVAD as her “door bell”). Kids for Cancer is currently paying for Maddie’s medications but that will end shortly, and Jason and Meghan will have to cover the financial burden.
Unfortunately, Maddie’s mom has her own health issues and was diagnosed with MS. She has been off work but is forced to go back to work because they are so financially stretched. However, she can only work part-time because of her illness and physical limitations.
This family desperately needs our help! Any donation, great or small, will make a huge difference in their lives.
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- Bob & Stacey Bomak
- JOEY Bell Tower
- Ed Nolin
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