Lily was born with a large port-stain birthmark on her face which was one of the signs of a very rare disease that this brave little girl is now battling – and smashing goals along the way! Go Lily!
“Mahalia was my first child, so I thought all babies cried and didn’t sleep. Little did I know that a baby was supposed to sleep more than three hours in a 24-hour span, not vomit after every feed and not scream 20 hours a day.”
Bedtime with both a toddler and a baby in the house is always hectic, but for the Oakley Roberts family, it’s also a matter of life or death.
“The not knowing is the hardest part. But in some ways, it’s also the best. Sure, we don’t know what her future holds but no one really does. With Gigi there’s no roadmap to follow, and no milestones to track.”
This incredible little girl is named Anna. She has a very rare skin condition called Harlequin Ichthyosis. Have a read of her amazing journey so far – she is truly the epitome of strength and beauty – and so is her amazing mum, Jennie.