What is Summer Camp with SRNA?
By Vittoria Anania
What is summer camp? Summer camp is an experience for kids to make friends, explore their surroundings, and to discover themselves.
What is summer camp for children diagnosed with a rare neuroimmune disorder? Summer camp for children with a diagnosis is even more. It exceeds their diagnosis and introduces the opportunity for them to be “normal” kids. No one is stared at, no one is whispered about, and no one ridicules anyone about their condition.
My daughter, Giosetta, was diagnosed with Transverse Myelitis (TM) at 3 years and 8 months. Prior to her diagnosis, we had never heard of the condition. August 7th, 2025 will mark a year since the beginning of her 7.5-week hospital stay. We are a family of five and I never imagined that I would spend time away from my other children. It was the hardest thing we ever experienced as a family. Giosetta was in a lot of pain, but she conquered it all. She pushed herself every day, and she has overcome so many challenges related to her disabilities because of it.
Being a TM mom in Florida was so lonely. I googled and joined the TM coalition group on Facebook who suggested the SRNA website. I immediately became intrigued and joined as a member. I found “Family Camp” and quickly emailed for “more information.” I finally felt a small sense of relief. I decided to look at virtual support group meetings and attended via Zoom for parents. At last, I talked with people that understood and experienced similar issues.
I received an email response for Family Camp and filled out all of the paperwork. We were thrilled when my family was chosen to attend. We have experienced a lot of financial losses over the past year and have never been on a family vacation. This was not only an opportunity for us to vacation, but to meet similar families experiencing the same things. Walking into camp and watching the joy in my children’s eyes, especially my daughter’s, filled mine with tears.
A huge weight was lifted off my chest knowing we were with a group of people who understood.
Meeting Sandy was an incredible experience within itself. He is so warm, inviting, understanding, and connecting with him meant a lot to our family. I only have amazing things to say about everyone that we met.
We were also so impressed with our accommodations.
Our cabin was immaculate, we had our own washer and dryer, and the kids loved the bunk beds. We do not have a bathtub at home, so Giosetta loved using the tub in the cabin. If you ask all three of my children their favorite activity, they can’t pick one, they will tell you the horses, zip line, and pool. Overall, everything was entertaining.
I was so grateful for breakout sessions, where parents gathered to hear from medical professionals, but I regret not asking more questions. Meeting other families and hearing their stories was heartwarming. We all could relate to one another. My husband and I felt like we could breathe again. Hearing people say that my daughter’s sass is going to push her places gives me strength. To hear it from other moms with children that went through similar things gives me hope.
Many people that don’t know what TM is tell me that she will recover every day. They don’t understand. Even with recovery, she will live with TM for the rest of her life. Family camp showed us what her future may look like. It gave us a glimpse of having a better quality of life.
We had so many meaningful conversations with many of the parents of other kids and with adult volunteers living with a neuroimmune disorder. They were so helpful and gave some wonderful advice.
Coming from a place where people are in denial about my daughter’s condition, camp was a wakeup call that she will have recovery, but she will never be the person she was before TM. This type of thinking used to break me, but I have finally accepted that it’s not just going to disappear. It’s okay for my child to be different, we are not all the same. We all wish that our children are perfect, and they are no matter what their condition is. Their condition doesn’t define them, but their strength and wisdom does.
Camp showed us what their abilities can do and not what their disabilities stop them from doing. My family doesn’t care what position we are in next year financially—it has been difficult—but we have made the decision to try and make this a family experience every year. My children made connections with so many of the other kids at camp and we look forward to seeing their beautiful faces again. Thank you SRNA for making this possible. Thank you, Sandy, for dedicating your life to this.
I will do whatever I can as a parent to be my child’s advocate and to ensure people know what SRNA is, especially family camp. SRNA deserves all the funding in the world. Camp brings happiness through the struggles. It makes families forget what they’re facing at home. It gives them a sense of belonging. My family and I will forever be grateful and can’t wait for next year. I hope to ask more questions and to have more meaningful conversations. Knowledge is powerful and the key to a better future.
Cheers to Family Camp 2026!
With Love & Gratitude,
The Anania Family
Our “In Their Own Words” blog posts represent the views of the author of the blog post and do not necessarily represent the views of SRNA.
