Erling Longman - Tango2
Like most two year old children Erling Longman is a happy little boy however, Erling is still rare. He has a very rare genetic disease called Tango2. There are only around 100 known cases worldwide, although there are probably many more children, adults and families who are affected but remain undiagnosed. Erling’s disease has impacted many aspects of his life and will continue to do so until a cure is found. He was born a healthy baby and, for the first year there was no reason to suspect he had a life-threatening illness. He met all his milestones and was walking by his first birthday. Soon after this Erling started having unusual episodes. On a daily basis, he would become lethargic, drool, lose speech, his eyes would become unfocused and he would lose the capacity to walk or even to crawl. Over time it became evident to us that he was no longer making his milestones, that his legs had become very stiff and he found speaking very difficult.
As parents, we were worried, and met with many doctors, had medical tests including admission to hospital with suspected Epilepsy and Ataxia. Fortunately, Erling’s Paediatrician had cared for one other Tango2 patient. She connected the dots, took some blood and Erling was diagnosed with Tango2 just after his second birthday. This recessive genetic disease was no one’s fault and could not have been stopped or predicted. Tango2 is a type of neurodegenerative metabolic encephalopathy. In simple terms this means Erling’s body does not make energy and get rid of waste correctly and, over time, this can damage his nervous system and brain. This diagnosis meant that Erling would have physical and intellectual disabilities. Even more concerning, he could be hospitalised or even die from a metabolic crisis or a cardiac arrhythmia at any time.
In the months since his diagnosis Erling has started on a cocktail of supplements which have greatly improved some of his symptoms and his quality of life. However, very little is known about this disease, no approved medicines exist and without significant research, his life will remain at risk. We are so proud of this little boy. He has a smile that radiates love and a laugh which nobody could resist. Whilst he has hard days and a rough road ahead he is full of joy and we remain optimistic for his future. Erling lives in Western Australia with his mum dad and sister. Please consider giving during February, rare disease month.
To learn more about TANGO2 Disease, visit the TANGO2 Research Foundation's website at https://tango2research.org/ or find us on Instagram @tango2researchfoundation
Thanks for your work and passion for these rare individuals.