Family

She Planned Her Daughter's Life, Then A Rare Disease Made Her Rethink Everything

All parents have expectations for their children, but Sara Gardner took things to another level. Before her daughter Clara was born, the mom-to-be made a long list of things she wanted her daughter to accomplish.

This list included everything from dancing ballet to riding a horse and getting a good job, but Sara had to rethink her expectations when Clara was born with an extremely rare disease.

Her condition, Smith-Lemli-Opitz syndrome, affects just 800 children worldwide, and only 30 in the UK. It means Clara will never accomplish some of the things on Sara's list, so she drew up a new one instead.

Clara's conditions causes lots of small differences that affect what she can do. She has webbed toes, a cleft palate, and there's a risk she won't survive past childhood. Sara says she's not upset by all the things her daughter won't be able to do, instead she's learned to appreciate the little things.

"Yes it would have been lovely for Clara to ride a horse," she told The Mirror, "but seeing her face when we dipped her toes in the sea was magical and when the sun shines on her face and her eyes flicker with joy I feel like the proudest mother on earth."

To help remind other parent's what really matters, Sara's updated her list with new, realistic hopes for Clara's life. While the old list included traveling the world and playing an instrument, the new one includes goals like "pick things up with both hands," learn to crawl or walk, and to touch her toes - something Clara has already accomplished.

"Writing it down helped me focus on what she could still achieve rather than what she couldn't," Sara says. "It gave me a new sense of determination to help my daughter reach these goals."

Clara's taught her mom about what truly matters in life, and Sara hopes she can share that lesson with mothers everywhere.

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