And double liver-kidney transplant on the same day for 16-year-old twins suffering from a rare metabolic disease: the operation was performed on Baby Jesus thanks to a compatible donor and the generosity of his family. Today the kids, who were forced into a strict diet to counteract the serious effects of their disease (methylmalonic acidemia), celebrate one year since the transplant with a quality of life more similar to that of their friends and schoolmates, also being able to indulge the taste of a pizza cooked by themselves in the catering institute they attend. On the eve of National Organ and Tissue Donation Day (April 14) their story is an encouragement to all families going through similar difficulties.
L‘methylmalonic acidemia it is a rare disease that affects approximately 2 people out of every 100,000. In the body there is a progressive accumulation of methylmalonic acid, a highly toxic and harmful substance for various organs and systems such as the nervous system, kidneys, eyes and pancreas. From the first days of life, patients experience crises of metabolic intoxication, responsible for neurological disorders, neurocognitive deficit, growth retardation and renal failure.
“Until a few years ago – explains Carlo Dionisi Vici, head of Metabolic Diseases and Hepatology of the Child Jesus – the only treatments available were based on a very restrictive diet with low protein content, the ‘precursors’ of methylmalonic acid, which had to be maintained throughout one’s life. Over the years – continues Dionisi Vici – an answer to these objective limitations of diet therapy has come from organ transplants: today liver transplants or combined liver-kidney transplants are increasingly used to improve patient prognosis, reduce the risk of complications and improve quality of life”.
“One year after the transplant – says the boys’ mother – we see the doctors’ promise fulfilled: the boys are more serene and calm, with a new autonomy and maturity. We parents too are experiencing for the first time the freedom of a lifetime ‘normal’ with fewer worries about the management of their disease and their health. It was a very difficult journey, in which we experienced a lot of fear and anxiety, but today I feel like recommending the choice of transplant to other parents who they experience the same difficulty because the lives of their children and the whole family will change for the better.”
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