Девочке-подростку из Нальчика нужна помощь в диагностике серьёзного заболевания

Девочке-подростку из Нальчика нужна помощь в диагностике серьёзного заболевания

Шестнадцатилетней Даше Сурневой очень нужна помощь в уточнении диагноза тяжёлой болезни. Врачи разводят руками, не в силах понять причину. Нужен точный генетический анализ, на который, к сожалению, не выделяются средства по ОМС, а у многодетной семьи такой возможности нет.

Заболевание начало проявлять себя недавно. У девочки резко усилились нарушения координации движения, появились проблемы с речью, глотанием, мимикой. Это усугубляет и без того печальную ситуацию.

Дело в том, что у подростка уже имеется очень редкое страшное заболевание –мукополисахаридоз IVтип В. Оно тоже началось совершенно внезапно, когда девочке было 5 лет. Во всём мире таких больных 30, в нашей стране – 5.

Такого пациента, как Даша, в московском НМИЦ здоровья детей не встречали. У девушки разрушаются суставы, деформируются кости. От боли она не спит, кричит ночами, а обезболивающие разрушают желудок.

Дарья уже перенесла несколько тяжелейших операций, за исход которых врачи не ручались. При этом она не опускает рук, занимается спортом параолимпийцев «бочча», похожему на боулинг.

Трёхлетнему брату девочки, Мише, совсем недавно поставили тот же диагноз. Ещё и поэтому важно как можно быстрее оказать помощь.

Семье помогает фонд «Правмир». Его сотрудники призывают всех присоединиться к помощи людям с неустановленными диагнозами.

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