[vc_row css=”.vc_custom_1582207165626{padding-top: 5.15rem !important;padding-bottom: 5.1rem !important;}”][vc_column][vc_column_text css=”.vc_custom_1584009861466{margin-bottom: 2.5rem !important;}”]<\/p>\n
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We now know that the VPS13D gene that is mutated is responsible for a series of progressive,\u00a0irreversible neurodegenerative disorders which condemn the sufferers to a downward spiral of handicapping motor function loss.<\/p>\n
For 7 years we didn\u00b4t even know what was causing the disease. \u00a0In February of 2018 the door of hope was opened for the undiagnosed sufferers of VPS13D mutations. \u00a0Now that the cause was found we can finally find a treatment.<\/p>\n
In Chloe we know she suffers from muscle pain, especially in her back, hips and legs as well as daily muscle cramps. \u00a0She has difficulty walking, talking and swallowing which has put her life in\u00a0risk many times. \u00a0During years Chloe suffered from horrible night terrors that have recently subsided. \u00a0Also her disease has caused a visual perceptive learning disorder that affects her schooling and although her intelligence is unaffected she is behind in school.[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][vc_row_inner equal_height=”yes” content_placement=”middle”][vc_column_inner width=”1\/2″][vc_column_text css=”.vc_custom_1584009781511{margin-bottom: 2.5rem !important;}”]The progresssive nature of the disease increasingly deteriorates her nervous and muscular function. Her mobility, stability, speech and swallowing are all affected. \u00a0In some cases there is cognitive damage. \u00a0The metabolic error translates into poor production of energy for sufferers and they are generally extremely tired and limited day to day.\u00a0<\/strong><\/p>\n The VPS13D gene leads to damage of the\u00a0mitocondria, the energy producing element of the cells, simply put its as if her nervous system is slowly starving causing the wasting away of her nervous and muscular systems. \u00a0This leads to atrophy and loss of function in her hands, arms, legs and mouth and the damage is\u00a0irreversible. \u00a0We must stop the deterioration, the TIME is really important for Chloe\u2019s life.[\/vc_column_text][\/vc_column_inner][vc_column_inner width=”1\/2″][vc_single_image image=”1495″ img_size=”large” alignment=”center”][\/vc_column_inner][\/vc_row_inner][\/vc_column][\/vc_row][vc_row full_width=”stretch_row” css=”.vc_custom_1582207321456{padding-top: 3.15rem !important;padding-bottom: 3.15rem !important;background-color: #f7f7f7 !important;}”][vc_column][vc_row_inner equal_height=”yes” content_placement=”middle”][vc_column_inner][vc_column_text]<\/p>\n [\/vc_column_text][vc_empty_space height=”20px” hide_on_mobile=””]Visit our Facebook page and share your story!<\/h4>\n