The curious case of the Clark brothers.
About this work
This is a documentary about Michael, aged 42 and Matthew, 39, brothers who both suffer from a rare form of leukodystrophy; a genetic disorder that attacks the myelin sheath covering the nerve fibres of the brain, this in turn causes their nerve systems to short-circuit. The condition slowly causes their brains and bodies to regress to a childlike state, meaning that in time they will no longer be able to swallow or communicate. Leukodystrophy usually presents itself in childhood, the Clark brothers however were reaching their late thirties before they developed any symptoms, until this time both brothers had lived normal lives; both had been married and Matthew had had a daughter; Lydia who was now pregnant with her own baby. Although she knows there is a chance that her unborn son may also have the disorder she is not too worried as she doesn’t think that it will affect how she feels about her child. Due to the effects of the disease both brothers are now completely dependent on their parents; Christine and Tony. Although the brothers have mentally regressed to a childlike state, Christine tells that her boys are not children, rather fully grown men and therefore need to be treated as adults not as children. Michael knows that he is a man and has memories of the life that he has lived. The programme primarily covers the story of the parents and their process of coming to terms with their sons’ prognosis. Christine and Tony had been living in Spain for the last five years before being contacted by the authorities and had lost touch with their sons. On learning of their situation, Tony and Christine moved back to Lincoln where there sons were to take sole responsibility for them. They had attempted to keep medical testing and social services at arm’s length. The documentary also interviews Lynda Carthy, who like the Clarks also has a child suffering with leukodystrophy. To help and advise other families like her own, Lynda set up the Myelin Project, a non-profit charity which funds research in to demyelinating diseases. On meeting Lynda the Clark’s become fully aware of what lies ahead for them and their sons. Finally Sarah Hunt is interviewed, another mother of a child suffering from leukodystrophy. Her son Alex was diagnosed at the age of seven and continues to live 12 years later; he can no longer swallow and is fed through a peg tube which has been directly inserted into his digestive system. Alex’s only method of communication is through blinking.. Sarah’s other son Aiden was also diagnosed with leukodystrophy, but he received a bone marrow transplant which has saved his life; there is still hope if the disease is caught early enough.
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