How do I adequately explain exactly what the TMA Family Camp meant to my son Logan and me? I’ve been meaning to write about our experience since returning, but every time words completely fail me. Ultimately, I cannot wait any longer, so here goes…
Logan was completely paralyzed from the neck down by rapid onset Transverse Myelitis on 7 February 2005 when he was almost 6 months old. Among the myriad of conflicting emotions any parent would go through, the feeling of isolation was ever present. I felt isolated from families with healthy kids, from my own family while trying to convince everyone I was positive about Logan’s prognosis, from the rest of the world by being stuck on the southernmost point of the African continent.
Back in 2005 I did not have a smart phone or iPad and could only access the Internet once Logan was discharged from hospital. I learned that there were other treatments offered in the U.S. called IVIG and Plasma Exchange (too late to try at that stage according to his then neurologist). Once I started communicating with members of the TMA and specialists in the USA, the feeling of isolation and desolation actually became worse and I longed to take my beautiful baby to these people who seemed to care about an unknown baby in South Africa and also know a thing or two about TM. I needed to meet other moms and TMers who’d understand how frightening and overwhelmingly sad our lives have become.
Travelling to the US seemed impossible for many years. We’ve learned to adopt and cope with Logan’s condition and our lives took on a new ‘normal’: certainly not unhappy, but definitely challenging. Logan became an inspiration to all who met him and we were so proud of both our young sons for handling such a difficult situation with incredible courage.
I heard about the TMA Family Camp early in 2012 and immediately knew that we HAD to get there. Unfortunately we need to travel 8600 miles to get there and transatlantic flights are not cheap! We were determined to attend the 2013 camp, but by March 2013 it became heartbreakingly evident that we would not be able to afford airfare to America.
I received a phone call from Sandy the day after I notified CCK that we could not attend. He was adamant that we could raise the funds needed and that I should contact the airlines to ask for a discount or even a sponsorship. To be absolutely honest, I thought that this kind man was bonkers. Life in Africa is tough and I was of the strong opinion that nothing’s for free. To humor him, I approached Delta Airlines who does direct flights from Johannesburg to Atlanta. I reasoned that an American Airline might be more willing to offer sponsorships since Americans overall seemed much more involved in charities and generous.
Delta declined my request and upon Sandy’s godsend persistence, I approached South African Airways. I wasn’t at all certain which department to contact at SAA, but Google supplied me with an e-mail address to the Corporate Sponsorship Department. Not at all very optimistic, I opted for a brief description of Logan and attached the incredible motivational letter supplied by the TMA.
Three weeks went by before I received a reply from SAA. They required a doctor’s letter confirming Logan’s diagnosis. Cautiously optimistic, I forwarded said confirmation and unbelievably received a phone call within 5 minutes, offering us two round trip tickets in Business Class!
Camp was everything we hoped for and more! Although Logan felt very self-conscious speaking English, he absolutely loved all the activities and festive atmosphere. Where once he was afraid of getting hurt, he fearlessly enjoyed everything (apart from getting too messy during the messy games), even horse-riding.
Needless to say, all our expectations were exceeded. Not only did Logan have the time of his life, but I also gained invaluable information, solid friendships with families in similar situations and medical support to assist us in our fight against Transverse Myelitis.
Although Camp was informative and all out fun, the most important thing I took home, was renewed hope and courage to continue fighting this disorder and never give up! I feel connected to the people I’ve met on the Internet before, and now know in person.
Hopefully we can attend Camp again in 2015 and take dad and siblings along!
~ Rachel Botha, mother of Logan (9 years old)