A GRIEVING family are paying tribute to their inspirational daughter who helped prompt a change in the law.

Stacey Preston, of Heber Walk, died aged 20, after a lifelong battle with neurometabolic mitochondrial disease.

Dad Paul said: "She was my inspiration for 20 years.

"There's no words that make sense at the moment – we're trying to console ourselves because she's pain free and she's flying free with the butterflies, she loved butterflies.

"She suffered but she was here."

Mitochondrial disease affects the cells of sufferers as the mitochondria in the cells, which produce energy, do not work or work inefficiently, meaning that the cell cannot function properly.

The disease affects each individual differently and to a different extent.

A mitochondrial disorder has affected three of Paul and his wife Rachel's five children.

Stacey's sister Kristen died in 1992, aged just eight weeks old.

This prompted Paul to set up The Children's Mitochondrial Disease Network (CMDN) in 1998 to support other families, raise awareness and campaign for improved treatment and management of mitochondrial disorders.

He has given conferences across the world and was also invited to sit on a Government committee, the Human Fertilisation and Embryology Authority (HFEA) Mitochondrial DNA Embryo Research Overview Group.

This group ran a public consultation and investigated techniques, safety, regulation and attitudes towards mitochondrial donation, which led to a controversial change in the law this year.

"It was a big big deal," Paul said.

"It changed the law in terms of working with embryos and it will help a lot of families "I was invited on the committee as a parent and a person knowledgeable about this disease and was the only non-medial professional on that committee."

Stacey was cared for at home by Paul and Rachel throughout her life and died on July 30.

Her funeral, which the family has called 'Princess Stacey's Final Celebration Journey'. takes place on August 19, when a horse-drawn white carriage will take her from Heber Walk to St Helen's Church for a service at 1.30pm.

There will be a further service at Vale Royal Crematorium at 3.15pm.

Paul said: "The service will be a celebration of Stacey's life, filled with happy forever lasting memories, in which we encourage those who have supported our family and the local community to be involved."

The family has asked people attending to wear pink and purple in memory of Stacey.

For more information about the funeral ring George Bell Funeral Directors on 01606 42534.