Lucy Parke’s family knew that their daughter’s life would be cut short by an extremely rare health condition, one that expedited her aging process to eight times the average. So, when she died, they commemorated her love of life with a bright, beautiful casket far from the average design.
As soon as Lucy was born, her parents found out that she was different. Doctors diagnosed her with progeria, a health condition so rare that it affects only one person in every four million.
Children diagnosed with progeria don’t always show symptoms right away, but indicators such as loss of hair and delayed growth start to show during their first year of life. That’s because the condition hastens the aging process – some estimate that those with progeria age eight times quicker than the average person.
All it takes for a child to develop progeria is a mutation in one particular gene, called lamin A, which creates the protein required to keep the nucleus of a cell intact. When lamin A is mutated, it produces a different form of protein that causes cell instability, thus hastening the body’s decline.
And, even though experts know how the condition occurs, it’s impossible to say who will get it. It’s rare that this genetic mutation is hereditary – instead, most new cases occur randomly. There’s no cure for progeria, either, although some research has uncovered potential therapies.
But that still means that children like Lucy face expedited lives – most who suffer from progeria only live to be around 13 years old. Some may live for up to two decades, but others succumb to the condition earlier. Unfortunately, Lucy fell into the latter category.
On New Year’s Day in 2018, Lucy’s parents, Stephanie and David, took to Facebook to reveal some tragic news: their eight-year-old daughter had passed away after her lifelong fight with progeria. But she died peacefully with her family at her side.
“We have lost our precious Lucy,” her parents said in a statement, according to Belfast Live. “Her body was weak but her heart was strong. Her love for life and wonderful smile made us proud to be her parents.”
As well as her mother and father, Lucy left behind three younger brothers and sisters: twins Jenny and Jake and a younger brother named Ben. And, even though the family always knew what the little girl’s condition meant, it didn’t make their loss any less painful.
Reverend Russell Edgar spoke to the Ballyward, U.K.-based family after Lucy’s passing. He told the News Letter, “As you would expect, they are very, very upset. Sadly in Lucy’s circumstances her death was not unexpected, that is not to say that it makes it any easier to come to terms with.”
It wasn’t just her family who mourned her loss, either – tributes to the eight-year-old appeared all over social media sites. Catherine Campbell, an author who interviewed the little girl’s mum, Stephanie, for her book When We Can’t, God Can, said, “Many people have been encouraged and blessed by Lucy’s life.”
Campbell went on to say, “She was beautiful in every way, but she had the premature aging condition progeria and fought bravely against the effects it had on her tiny body these past eight years.”
Lucy’s school shut its doors early on January 4, 2018, so that students and teachers could attend her funeral. The “Service of Thanksgiving,” as it was called, drew over 500 people to celebrate her life.
The family requested that mourners refrain from sending flowers. Instead, they were asked to donate to local organizations that had made an impact on the young girl’s short life, including a children’s hospice.
During the service, Lucy’s parents shared a message of love that they wrote to their daughter. “The past year was hard and our hearts are broken and tears are flowing,” they wrote. “Just photos, videos and memories left. But your life was not in vain.”
“We know you are in heaven,” they went on. “We are so thankful for everything that you have taught us, the hugs, the laughs and smiles you gave us. The last eight years have been amazing. Thank you, Lucy.”
Perhaps in homage to their daughter’s cheerful spirit, Lucy’s parents chose a one-of-a-kind coffin where she would be laid to rest. It was pastel pink with rainbows painted on the front and sides. A bright flower arrangement sat on top.
Reverend Edgar, who led the eight-year-old’s funeral service, told the Belfast Telegraph afterward that “it was a hard day for the family but it was also a great testimony to who Lucy was.”
He went on to say, “Obviously the family are devastated at the loss of their little girl, but, in terms of the whole service, I think they could rejoice in the fact that she had a wonderful life and we believe that she is safe at home with the Lord.”
Although Lucy succumbed to her condition, there were 144 people known to be living with progeria across the world at the time of her passing. Charities like the Progeria Research Fund continue to spread the word about the genetic mutation while raising money to fund research for treatments and a future cure.