Hope for Ella
When Ella was diagnosed with Neurofibromatosis (NF1) in May 2011 we weren't sure what to expect. Everything we read and were told said it has no set course, no normal. We found out that most patients could never see any symptoms at all or it could escalate to having tumors throughout the entire body and anywhere in between. VERY SCARY NEWS!!! But we wanted to stay optomistic so we believed that we would be the "lucky" ones and see absolutely no symptoms. Shortly after, we went in for an MRI and learned that there were tumors on both of her optic nerves causing serious vision loss. We were told that we probably wouldn't see anything more and it was typical in NF1 cases to have them and never have anything else again. We were put on a schedule to monitor the tumors having MRI's with sedation every 3 months. So again we remained positive and hoped for the best. We walked on eggshells for the next 9 months through every MRI, watching her intently for any signs of bumps, further vision loss or anything that would say we had more to worry about and nothing. It seemed as though this was the worst of it and we were out of the woods. Until July... we were just about to go to a 6 month schedule when the tumors showed growth. We went again in October and this time the tumors showed significant growth. We were told to have another MRI in 8 weeks this time and we will at the end of November to see if there have been any further growth and then we will move to treatment if so. If this is what we are going to have to battle for the rest of our lives then we are going to need as much research as possible so that these tumors cannot cause any more trouble. Ella is wonderful and as happy as can be... She is so kind and generous. Ironically enough she gave her long blonde curls to locks of love long before NF1 was even on our radar. We continue to stay strong and positive and we help Ella get thru this and beat it!!!
The Race For Hope is a fun and inspirational day where the brain tumor community unites to inspire hope and take action in the fight against brain tumors.
Progress in this fight starts one team, one person, and one dollar at a time. Like the National Brain Tumor Society, we are fiercely committed to finding a cure.
Join us and together we will make a difference.
|Hope for Ella||Raised|
|Denotes a Team Captain|