Bognor family raise money for CDH UK in memory of nine month old girl

“We won’t remember the bad, because we have the good. It’s the giggles and the smiles, the things we never expected her to do.”

Gracie Sayer has been without a headstone since she died in August 2016. Her family said it was ‘awful’ and ‘upsetting’ to know she was one of the few people in Chalcraft Lane Cemetery without one.

After several years of struggling to save the money themselves, the family decided ‘enough is enough’ and started a Just Giving Page.

Eleven days later, they smashed their initial goal of £2,500. The family put it down to hard work and enthusiastic local support.

“We didn’t expect it to go this crazy,” said Lucy May, Gracie’s aunt. “It’s been absolutely incredible.”

Grandmother Sue Sayer added: “It’s the small donations that have really helped. It’s been friends and family and local people who have donated or taken part in the raffles. It all adds up.”

Despite reaching their initial target, the family are still raising money for CDH UK and the Sussex Snowdrop Trust, two charities which provided vital support to Gracie and her family.

Lucy May said: “We want to shout this loud and proud now, so that we can get those numbers up and donate as much as we can.

“And obviously we want to get Gracie’s story heard, too, because a lot of people don’t know about CDH.”

CDH, the condition from which Gracie suffered, is caused by a hole in the baby’s diaphragm, which impedes the proper development of its lungs.

The condition is about as common as cystic fibrosis, affecting one in every 2,500 births. But so little is known about CDH that, when Gracie was born in late 2015, there were only four hospitals in the country capable of treating her, most of which were already full.

Gracie’s grandmother said: “This condition is devastating. Absolutely devastating. It’s a horrible way to lose a child.”

Even after all the heartbreak, though, the family’s prevailing memory of Gracie is positive.

Mrs May said: “We won’t remember the bad, because we have the good. It’s the giggles and the smiles, the things we never expected her to do.”

To donate, visit Gracie’s JustGiving page.