Then came a barrage of terms that Jessica and her soldier husband, Karl, had never heard before – metabolic disorder, MID and suspected Leigh syndrome – and the sit-down talk that every parent with a sick child fears the most. On later advice, Jessica gave up breastfeeding and put Bella on formula milk, but to no avail. The Williams family must now live with the chronic uncertainty that is the hallmark of MID, and the painful knowledge that there is probably very little that medical science can do for Bella. If only a few mitochondria in the crowd are out of action, then the cell might still be able to produce enough ATP to function. To have serious symptoms at such a young age, they were told, probably signalled a severe form of MID, which means her cells are not making enough energy to function properly Even though a special high-protein feed has restored Bella to a healthy weight for her age, feeding leaves her exhausted and the left ventricle of her heart is enlarged, showing that her little body is having to work hard, even though she spends much of the day cradled in her mother’s arms or lying on her play mat.

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