When I think of Rosie I think of her incredible spirit, the way her eyes sparkle and light-up with excitement; her contagious laugh, her warm hugs and her amazing outlook. Rosie is larger than life; happy, crazy, silly, lovable, angry, and complex. I’m always in awe of her expanding vocabulary, her social skills, her fearlessness, bravery and strength. She is an amazingly articulate little girl. She has characteristics I admire; ones I see that even some adults don’t have down yet.  She is an excellent teacher, from whom I have learned so much about life and how to live it. I am so grateful for the gifts she has given me.

I don’t know just how long Rosie will be with us, but I do know she is making her mark on this world, touching hearts and inspiring many.

So much of what makes Rosie; Rosie comes from her journey, her battle, with Neurofibromatosis and brain cancer.  Rosie’s health is a rare and incredibly unique, combination of syndromes, conditions and complex disorders. Her treatments and her life’s experiences in the medical world have formed who she is today. You would never know the challenges she faces or just how critically and chronically ill she really is just by looking at her.

Rosie’s medical journey started on her third birthday in Aug of 2007, when she was officially diagnosed with Neurofibromatosis and then just five weeks later came the devastating diagnoses of an inoperable brain tumor. I, her mother, was by her side when we received the overwhelmingly, tragic news.   

Since that very difficult day, her journey has had many ups and downs; besides Neurofibromatosis (NF1), a disorder that causes tumors to grow anywhere in or on the bodies nerves, she has been diagnosed with a Hypothalamic/Chiasm Optic Glioma or Inoperable brain tumor (Brain Cancer), Acquired Obstructive Hydrocephalus (for which she has a VP Shunt), Central Precocious Puberty (CPP), Diastasis recti (unrelated to NF or tumor), Pituitary Gigantism caused by excessive Growth Hormone (GH) which requires daily injections to control her GH levels, Bilateral Optic Nerve Atrophy, Splenomegaly or enlargement of the spleen, enlarged kidneys, Tonsillar Hypertrophy, Mild Left Ventricular Hypertrophy (LVH) or enlargement of the left ventricle of the heart, two tumors on her back called neurofibromas, and hypertension or high blood pressure.  All of Rosie’s diagnoses are related to tumor location; the tumor however, is a direct result of NF1.

In the beginning, we spent about a month in the hospital and Rosie underwent five brain surgeries. Today, almost three years later, she has spent countless hours at Children’s Memorial hospital where a large team of doctors coordinate her non-stop care. She has had 11 surgeries, over 900 injections, occupational therapy, physical therapy, speech therapy and she has been on three different chemotherapy protocols. She also works with a child psychologist to help her deal with the amount of trauma and stress she faces. She will continue with this current chemo regimen until 2012.

To see how she is doing today, visit her care page at www.carepages.com “rosiespage”

Thank you for your prayers & continued support!