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 For the first year of his life, everything seemed normal. Blake was born at term via c-section, only because he was a large, healthy baby. Being the first child in the family, he has been spoiled from the beginning and very much loved. However, that happy feeling started to turn upside down after just a year of life. A routine check up led to a referral to a geneticist and over the next 6 months he exhibited symptoms that ultimately led to a diagnosis of NF 1, at the age of 18 months.
At the age of 2 it was suggested that Blake get an MRI to ensure that he had not developed a brain tumor. It turned out that he did. Blake had routine MRIs and remained stable for almost 6 years until he started having such bad headaches that he could only make it through an hour of school each day. He was originally diagnosed with migraines but at our insistence, Blake was given an MRI that showed tumor growth and acute onset hydrocephalus. Blake had a shunt placed in his brain to relieve the pressure and was started on chemotherapy. About 13 months after starting chemo, Blake started having headaches again. This time, a cyst on the tumor began to grow and caused hydrocephalus once again. His only choice then was have a craniotomy in order to resect both the cyst and as much of the tumor as possible. The surgery was a success with 1/2 of the tumor resected and Blake staying in the hospital for only 10 days. However, the relief from that surgery was soon gone when the headaches returned a few days later and he found out his shunt had clogged and needed a revision. A week after that surgery, the other side of his brain developed hydrocephalus and a second shunt was needed. He had 3 brain surgeries in 3 1/2 weeks. Nothing anyone should go through.....especially a child. That was 3 years ago. Since then, Blake's tumor has been stable and only recently (Nov. 2010) needed a shunt revision on one side. His latest MRI has shown that the tumor remains stable but the cyst is beginning to grow again. He has a wonderfully vibrant and energetic personality and instead of letting this diagnosis destroy him, he made the best of it and became an immense inspiration to his family and all of his friends! Please join us in raising money to find the cure!!!
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