Friday, May 8, 2015
May is a big awareness month in our household. It is the month we push to create more awareness and funding to find a cure for both NF, Neurofibromatosis, as well as brain tumors. I do not write too much about Emma's twin Gracie on here but she also has NF1. For those of you not familiar with NF it is a genetic condition or mutation that prevents your body from recognizing that tumors are a bad thing. Without this filter your body begins to grow noncancerous tumors. Usually this is not a huge issue and some people can live a long life before realizing they have this concern. However, for a group of NF people they suffer greatly. Tumors grow in their brain, down their nerve pathways and on their skin. They cause seizures, deformities, blindness, deafness and debilitating pain among many other issues. For the group of kids that show severe symptoms at a young age it is a battle so fierce that I dare not think about it.
Our identical twins are on opposite sides of the NF spectrum. On one hand you have Gracie, she displays the typical NF1 symptoms of cafe au latte spots, behavioral difficulties and bowed legs. She goes every 6 months to the Genetic Specialist but just needs basic monitoring. Emma is all the way on the other side, rare wrapped in rare. She falls in the less then 10% of NF1 patients to develop cancer, she already went blind and she suffers nerve pain (not sure if it is NF related or chemo related).
NF runs the whole spectrum. It is very important that we find a cure and soon. If we can develop a medication or treatment to help Emma's body realize tumors are bad we can give her a long and full life once we beat the cancer. Many of you have asked me, "when is this over?" or "when is her treatment finished?" I usually dodge the question. Why? Because this will never be over for Emma, ever. She will be heavily monitored her entire life. She may beat this cancer only to be hit with a bigger cancer in a few years. This is a lifetime battle, one that cannot be won here on earth. This is why we push for awareness. This is why we need a cure. Please join us this month in sharing about NF and creating brain tumor awareness. Paint your social media GRAY and explain to loved ones why they should care.
You have our permission to share these images on social media as long as the watermark is not removed and you do no fundraising on our behalf with out our permission.
Speaking of fundraising, we have two events coming up. A community garage sale in Modesto the 4th weekend of May and an online auction June 1-7th. She's a Fighter Please contact us by email with any questions or donations, firstname.lastname@example.org.