| Rosie is just one of Illinois’ NF Hero’s...but she is the reason our family and so many who know her are showing their support by making donations and raising funds by hosting fundraisers in her honor. They too want to see NF Research advance to where it can help Rosie and others like her, in her lifetime.
Rosie was officially diagnosed with NF1 on her third birthday in Aug of 2007 and she has been fighting it ever since. Her rare and complicated case started just five weeks following her NF1 diagnoses. We received devastating news that she had a Hypothalamic/Chiasm Optic Glioma or Inoperable brain tumor and Bilateral Optic Nerve Atrophy. Due to the tumors location, Rosie was also faced with Acquired Obstructive Hydrocephalus, a life threatening condition, and had to have brain surgery to place a VP Shunt to save her life. After multiple brain surgeries (5) due to shunt malfunctions, Rosie was left weak and facing yet another surgery to place a port in her chest so she could immediately start receiving chemotherapy, which she did, as painful as it was.
After three long months and the first round of chemo, the tumor had become aggressive and was growing very quickly, tripling in size. It was discovered that Rosie had high levels of growth hormone (GH) and that the GH was feeding the tumor and causing it to grow. She was started on eight-hour injections of GH suppressant and a new chemotherapy drug. She was then diagnosed with Central Precocious Puberty (CPP), which added more GH to her system. Then, yet another surgery to place an implant of medication to hold off puberty was placed in her left arm. She was the youngest one of 15 kids (at that time) at Children’ Memorial Hospital in Chicago, to receive this new implant. She continued on chemo for months ending treatment just two days before Chrsitmas. Her tumor remained stable for almost 8 months. But is now slowly growing again and her vision is deteriorating, she has now started a third round of chemotherapy and if it works, she could be on it for a total of 24 months.
Her GH levels are still high after28 months. We are trying the third and last of growth suppressant drugs, but Rosie has been reacting to it with rashes, swelling and itching. Early in 2009 she was offically diagnosed with Pituitary Gigantism, an extremely rare condition that has caused her to grow at a very fast rate and is due to the high levels of GH that her body continues to make. The excessive GH levels have caused many other complications. Her fast growth visible on the outside is also affecting her organs inside. She now has Splenomegaly or enlargement of the spleen, she is developing tonsillar hypertrophy or enlarged tonsils, Left Ventricular Hypertrophy which is an enlargement of the left ventricle of the heart, she has also developed hypertension or high blood pressure and has enlarged kidneys.
Due to medications to suppress the GH levels, she now has a form of Malabsorption Syndrome. Recently, during an exam she was found to have two neurofibroma or tumors on her back. We also were told she has Diastasis recti (a disorder where the rectus abdominis muscle seperates into right and left halves) but does not require surgery and is unrelated to the NF.
Rosie looks like any other kid. You would never know the challenges she faces or just how chronically and critically ill she really is, her attitude and spirit are truly amazing! She is a happy, strong, courageous little girl and a real inspiration!
She has not by any means done it alone. With the help and support of her loving family, loyal friends and a generous, charitable community who pray for her and cares for her, who have been so kind and giving she marches on. So many keep giving and giving—it truly is remarkable! Children and teens have helped Rosie raise money for research through lemonade stands, birthday parties, a carnival, dancing, bake sales, caroling and collecting coins. Rosie knows she can’t do it alone. She is thankful for her many blessings, thankful for Angels like all of you.
We fund raise because it’s the only thing we can do. We cannot sit idly by and wait and watch for changes, we have to fight hard and NOW! NF has no cure, no medications to help hold off more tumors; Rosie lives day-to-day not knowing what might come next, from MRI to MRI hoping for the best results. NF is unpredictable and devastating. We know of too many who have lost their lives to NF and pediatric brain tumors. Please help Rosie and so many others who live with so much uncertainty find a cure! Your dollars added together WILL make a difference—every penny really does count!
Thank you for giving the gift of HOPE!
To learn more about Rosie, please visit www.ResearchforRosie.com or visit her care page at www.carepages.com and visit, “Rosiespage”.
Thank you for your prayers & continued support!
Mark, JoAnne, Bella & Rosie |
