Help Save Natalie

Actress Gillian Anderson lost her brother Aaron Anderson to a rare condition with no known cure called NF1. Her brother was diagnosed at three years old and unfortunately passed away at the age of thirty. The disease causes tumours to grow on nerve tissue, leading to skin and bone abnormalities. They call this a rare condition, but it actually effects one in every thousand people. Everyone is posting about cancer and no one is shining light on neurofibromatosis. It is a condition that needs attention. 

Now , we need your attention. More importantly, a little girl needs your attention. That little blonde girl you see in the photo has NF1. Her name is Natalie and she is four years old and full of life. She is my cousin and her Mom is one of the most amazing people I've ever met. Natalie is the sweetest girl who loves unicorns and magical things like most girls her age. Unfortunately for her and our family, three weeks ago she had an MRI and her brain is now one giant tumour. Seven oncologists and specialists said they are not able to operate. She was diagnosed with the same condition Gillian Anderson's brother had, neurofibromatosis AKA NF1. It is not operable.

Have you seen the film Elephant Man with Anthony Hopkins, directed by David Lynch? That's what Natalie has. For years, this disease was mistaken as a cyst, or a lump...and no one had a cure. I am sure many others have lost loved ones because of this condition. It's heartbreaking. No one in the family has ever had this, it's not genetics this time-- it's simply unexplainable. 

Fortunately, they now have a drug that can potentially save Natalie's life. They are able to get the drug in two weeks and Natalie will hopefully start treatment. We are all praying for her during this time. I am being strong for my auntie right now, because she has spent her life being strong for everyone else. She would never ask for help, but I'm asking you to help her. I don't want her worrying about work or anything else. She is going to be with Natalie a lot during this time. Natalie needs her Mom. They will be attending doctors appointments and praying for dear life that a miracle will happen. My hope for her is that she can 100% be there for Natalie without any other stress. With your help, we can make that possible. Together we can potentially save Nati's life. Anything helps. Even spreading the word about this rare disease. Whether it be a donation or a doctor referral, advice.. or anything. Please open up your heart and reach out!

Natalie's Mom, Tamara:

[email redacted]

Let's help save Nati <3

Much love,

Courtney Paige

PS- the film Elephant Man with Anthony Hopkins, directed by David Lynch:

https://www.youtube.com/watch?v=2ToC4vh_itg