Remy was little when she was first diagnosed (with NF1). I kept saying something was going on, but no one was listening. She was the youngest of six, but I called it mom’s intuition. She started getting spots all over her tiny body. A few were two inches in length. She had a hard time breathing. After the third visit to the Pedi and finding out her white blood cell count was super high, they rushed us to Nationwide Pediatric Hospital, where 3-4 doctors came in one at a time to look her over, only to confirm she had NF1.
Having a child living with NF1 as a caregiver can be extremely difficult. There is conflicting information even from the most experienced doctors. I think that is what hurts the NF1 community the most. We’ve been to three of the best pediatric hospitals in Ohio, and they ALL do things differently when it comes to NF1. There are so many specialists that need to watch your child because NF1 is complex and different for every child. Remy has been seen by every specialist you can imagine. She’s been on chemo for over a year now. She’s had extensive eye surgery. She’s had blood drawn and MRIs more than any human I’ve ever known. She will have to be followed for the entirety of her life.
I think the biggest defining moment so far for me as a caregiver was being able to advocate for my child. Looking at new information, knowing that at any time I can speak up if I don’t agree with something and being able to navigate this new world for her future living with NF.
Favorite Song
Girl on Fire by Alicia Keys
Dream Superpower
She said if she had a superpower it would be to be invisible
Favorite Food
Chocolate
-submitted by Jennifer, Remy’s mom
