Rosalyn Campion and Paul Marsh say their lives have been a living nightmare since the death of their “shining star” Maddie at their home in December 2012.
The Herne Infants pupil died two days after being taken home unwell from school and a week after performing as an angel in the Nativity play.
Mystery surrounded her death six days before Christmas until a post-mortem ruled it was caused by complications from a rare kidney disease called xanthogranulomatous pyelonephritis, or XGP.
The condition – which affects just one in 100,000 – is so unusual some doctors the family spoke to had not even heard of it.
Now the couple say they are ready to raise awareness of the dangers of children’s kidney diseases, which can often go undetected.
Mr Marsh and Maddie’s 19-year-old brother Connor – a former Canterbury College student – will cycle from London to Brighton to raise money for Kids Kidney Research in her memory.
The 56-mile challenge will take place on Sunday, September 7, with the family raising more than £1,000 so far towards the cause.
Speaking to the Gazette, Rosalyn and Paul say they will never understand why their daughter died, revealing the constant pain her death has caused.
Rosalyn said: “You can never prepare yourself to lose a child.
“It has changed everything. It was more than losing a child – all of our futures have been robbed.
“You can never prepare yourself to lose a child. It has changed everything. It was more than losing a child – all of our futures have been robbed." - Rosalyn Marsh
“You see children growing up and you think that should be Maddie. I feel so sorry she is missing out.
“I feel pain all the time. It lives with you 24/7. Even now it doesn’t feel real.
“The only escape I get is when I sleep and then I wake up into a nightmare.”
The couple say they will remember Maddie for her love of nature and the great outdoors, cats and her fascination with the sea.
She also loved helping her mum make cupcakes, drawing and sticking, pedalling off on her bicycle and anything pink or purple.
Rosalyn said: “I know I’m her mother but she was just the idyllic child. I don’t think I ever once had to tell her off.
“Everyone who knew her said she was adorable.
“She was a bright shining star in all of our lives and will shine forever on in our hearts.
“When we took her to the park she used to run off into the woods. It wasn’t the swings she was interested in, but the nature.
“We will never know what happened – it was hidden, which just adds to the devastation. It is heart-breaking.
“Christmases and birthdays and special occasions are tainted for us now – it just brings everything back.”
Paul, a project manager for Osprey Corporation in Chestfield, described the grief of losing a child as like “wearing a heavy coat”.
He added: “I just felt the need to do something for Maddie.
“With the lack of information out there it would be nice to help this charity.”
To donate visit the family's JustGiving page.
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