Mommy Terri's Words

Every Tuesday, we'll have at least one blog post that is in Terri's words. Here is today's:

In May of 2011 our world was forever changed when our seemingly perfect five year old daughter, Ella, was diagnosed with Neurofibromatosis (NF). At first we could hardly pronounce it let alone understand what that one word would mean to our lives. Researching NF frightened us to our core. Words like vision loss, scoliosis, disfigurement, hearing loss, development delays, behavioral problems, tumors and cancer were all associated with that one diagnosis. And to top it off there is no treatment! No way for us to stop NF from taking its course with our precious baby. What challenges would it present for Ella? Would she have pain? What quality of life could we expect? These and a thousand other questions surround us daily.  We live each day to the fullest but always have in the back of our minds… what’s next?

It started with the diagnosis, then a myriad of appointments and tests, then learning about the growths in her brain, followed by a diagnosis of ADHD, vision loss and more. After about a year of close monitoring through MRI’s we received the news that no parent wants to hear… We have to start chemotherapy. The tumors were growing and we needed to take action. Through all the headaches, needle sticks, sedation, tests and challenges, Ella has remained positive. She wakes up everyday ready to take on the world. Ella helps the homeless after every Terrific Treatment Thursday. She plans to hold a community involvement event to make headbands and hats for those losing their hair. She wants to raise money for research to cure Neurofibromatosis. She wants to, in her own words, “change the world”. Ella is brave, strong and a true inspiration. She is a constant reminder of the meaning of the words generosity and hope. It is for that reason that we are faced with a new challenge making her foundation a success. In addition to all that Ella wants to do… this also makes us want to reach out to other families challenged by NF and create a place of community, awareness and information so that no other parent feels alone when they hear “We’re sorry… there’s nothing you can do”.