Gratitude in Abundance – SRNA Family Camp

You know that feeling when you’ve burned yourself, the stinging persists, and then finally, when you put something soothing on it, it stops that sting and burn? Well, that’s what attending SRNA Family Camp was like for us. It was such a relief to find knowledge and information from expert medical professionals through both our individual consultations and the amazing parent information sessions, as well as having the opportunity to meet other parents and families that understood the struggles and battles we have faced over the last 3 ½ years. The compassion, empathy and support is indescribable.

Lina’s journey with TM has, like many others, been a difficult one, especially when trying to find answers and knowledge from medical experts. Lina is 17 years old and was 13 when she became ill with Longitudinally Extensive Transverse Myelitis (LETM). She was rushed to the hospital emergency after having collapsed and was in intense pain. Lina was paralyzed from the waist down.

In Australia, there are no doctors that have taken on TM as a specialty. After another hospital admission this year, with new weakness in her previously unaffected arms and hands, and with breathing issues, I knew that I had to do better to find answers. There was no one in Australia to consult with anymore; I had investigated thoroughly through neurology associations, spinal injuries and rare disease organizations in an attempt to find someone who could get to the bottom of what was happening to Lina. My only option was to contact experts in the USA.

Through the wonderful support and assistance of SRNA, I was introduced to SRNA Family Camp and applied with the hope of finding answers. When we were accepted, I began fundraising and organizing to make it happen. I just knew this opportunity would not come around again and the timing was just right. As the doors seemed to be closing in Australia for answers, the fundraising and organizing for the USA trip was taking off. Through the generous support, donations and travel grants from our local community, family, friends and SRNA, we managed the long trip from Sydney, Australia to the USA.

After having travelled 23 hours straight, we were picked up at Nashville airport by the wonderful volunteers of SRNA. Meeting them along with another family that attended camp was the beginning of an overwhelmingly emotional experience for me, and the road to answers for Lina.

Having specialist doctors taking the time to listen to Lina and hear her problems, struggles and issues, and then validating each and every one of them by going through her MRI and explaining to her why she is experiencing her symptoms, was healing in itself. Finding out things we did not know and having a plan for what has to happen next was amazingly comforting and reassuring. After years of struggles and frustration, in just a few hours we had more information, knowledge and a plan to make things better from the world’s leading TM experts… wow!

On top of this amazing experience, I also had endless hours of joy watching children and families laughing and having fun. You could just see how the stresses of daily life disappeared as they participated in the many fun activities hosted by the Center for Courageous Kids. It was truly heart warming. Not to mention the doctors and medical staff getting stuck into the fun too! How absolutely brilliant for children and their families to experience doctors this way and build bonds of trust and friendship!

Unfortunately, Lina’s pain levels from the long trip, along with her social anxieties, led to her not being able to participate in the many fabulous activities. Nonetheless, the love and care she received from the medical professionals, camp staff and other families was overwhelming. We were truly touched.

I spent a lot of time with tears of gratitude. I no longer felt alone in my battle for answers and I got so much out of watching the determination and courage of the children and their families.

I was amazed by the Center for Courageous Kids’ facility, what an awesome place! CCK creates a safe and easy way to negotiate the environment and the staff catered so well to our special needs and diets. It all added up to a wonderful experience.

We arrived feeling isolated, frustrated and exhausted, and we left with new wonderful family connections, and armed with knowledge and reassurance to guide and follow up with Lina’s doctors in Australia. So the burn sting and the emotional pain have been soothed by the connections we have made and the answers that were given from experts. Our gratitude is abundant for the existence and opportunity to attend SRNA Family Camp….and a very special thank you to those that went out of their way to help us Aussies learn how to say in a real Southern accent “fried green tomatoes”!

~ Lina and Susi Tuita