Emma was a normal little girl, with a normal little life. Yet, that 'normal' life came to a sudden halt when Emma's mama noticed a slight difference in her little one's shoulders. That difference led to many tests, many tears, and eventually a (not-so-normal) diagnosis of a genetic disorder known as Neurofibromatosis (NF1).
NF affects 1 in every 3,000 people. Those people can suffer from a variety of severe and troublesome complications and symptoms, including curving of the bones and the growth of tumors throughout the body. Sweet Emma has been battling both and proving the statement, 'small but mighty' with every surgery, hospital stay, and test.
Today, Emma's mama, Dyan, is an advocate for NF1 and pediatric cancer. She fights for her daughter and for children around the world to know that they are not alone and that they can find comfort in their imaginations. Check out her latest book, Amazing Annabelle: A Story For Kids Fighting Cancer. Read Dyan's Interview Below.
The Interview:
Emma's Diagnosis:
Neurofibromatosis (NF1)
My first thought after hearing my child’s diagnosis:
"That it was my fault...or at least my body’s fault. Since hers was a genetic mutation (not passed on from me or my husband) I figured her DNA not being right was because I’d waited too long to have kids."
If I could teach the world one thing about NF1, it would be:
"That she’s just a normal little girl, despite the pain she feels every day, despite all her surgeries, despite the future she faces. She still gets up every morning and plays with her toys and LOVES to bug her big brother."
One thing that has helped me process my emotions:
"Therapy. It helped me realize I don’t have to trap myself in a cycle of misery. That I’m allowed to be happy, that she can be happy, that we’re bigger and stronger than anything that happens to us."
One thing I have lost during this journey:
"My belief in happily ever afters."
One thing I have gained during this journey:
"My ability to see what’s important and keep my focus on it. I’ll never worry about stupid stuff again."
My advice to other moms on this path:
"Find someone to talk to, someone who will really hear you, someone who is neutral to the situation and can be your sounding board and confidant."
Our favorite cause: http://www.ctf.org/ "A foundation that’s been researching treatments and cures for NF for the last 40 years."
