Every milestone in a child's life - every birthday, every Christmas - should be a time for celebration and joy. But imagine if every year meant a slow decline in their health and every milestone a step towards losing them.
That's the tragic reality facing a couple from Hampshire who have two children with an ultra-rare and incurable degenerative disease.
They're trying to increase awareness of Sanfillipo Syndrome and recently undertook an epic cycle ride across Africa to raise money towards research. Martin Dowse went to meet them.
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Sunny this evening, then dry overnight. There is the risk of thundery showers for Kent tomorrow morning, then sunny spells by the afternoon
Sunshine to end the day then dry tonight. Tomorrow will be mostly dry and feeling fresher with the risk of a heavy shower in the afternoon
The video, obtained by ITV News, shows scores of migrants desperately trying to board lorries in a restricted area within the tunnel.