Story about Leukodystrophy .

A Leukodystrophy story

Feb 24, 2016


O meu filho, Guilherme foi diagnosticado em Janeiro 2014 com Leucodistrofia Metacromática. O primeiro sintoma foi com perda na marcha foi o que nos despertou a atenção de que poderia ter alguma coisa. Em Portugal não existe tratamentos, mas descobrimos em França, dois tratamentos em fase inicial, e, felizmente o nosso filho enquadrava-se nos critérios para fazer parte de um dos dois tratamentos. Iniciou o tratamento de terapia génica intracerebral. Apesar do avanço da doença e do Guilherme perder  a marcha, a fala, as suas capacidades, a doença estagnou. Daqui, passamos para a reabilitação, fez fisioterapia, terapia da fala, terapia ocupacional. Fez acupunctura, ozonoterapia... Iniciou este ano a Cura Reconectiva (3 sessões) e a osteopatia visceral (estamos a adorar o benefício desta terapia!). Entretanto, paramos um pouco todas as outras. Sempre com muito Amor e um dia de cada vez com pequenas e novas conquistas!

My son Guilherme was diagnosed in January 2014 with metachromatic leukodystrophy. The first symptom was a loss in the march was what aroused our attention that might have something. In Portugal there is no treatment, but we found in France, two treatments at an early stage, and fortunately our son framed on the criteria to be part of one of the two treatments. He began treatment of intracerebral gene therapy. Despite the progress of the disease and Guilherme lose gait, speech, their capabilities, stagnated disease. From here we move on to rehabilitation, did physical therapy, speech therapy, occupational therapy. Did acupuncture, ozone ... He began this year Reconnective Healing (3 sessions) and visceral osteopathy (we love the benefit of this therapy!). However, we stopped a little all others. Always with great love and one day at a time with small and new achievements!

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