Nicola Riggs has shaved her hair off to raise money for the Centre for Rare Diseases at the Queen Elizabeth Hospital Birmingham, in aid of the team’s research on Primary Hyperoxaluria.

Nicola’s inspiration to have her head shaved for charity came from her friend Sara’s son, Edward. Edward was taken to A&E when he was three months old, as he had been suffering from sickness and diarrhoea for the past week.

Initially, doctors thought that he looked fine and that his illness should clear up within a few days, as his blood tests had revealed nothing untoward. However, they decided to run tests on his urine, and realised that there was the tiniest amount of blood in it.

Almost immediately, they realised that Edward’s kidneys had failed, and his life needed saving. Little Edward has been in hospital ever since, and has undergone frequent surgery. Shortly after Christmas 2018, it was discovered that he has Primary Hyperoxaluria, a rare condition characterised by the overproduction of a substance called oxalate, due to a deficiency of an enzyme in the liver.

Baby Edward, who was Nicola's inspiration. 

Edward currently has to have dialysis for eighteen hours every day to try and remove as much of the oxalate as possible, as if it builds up in his body it will start to shut his organs down.

The Centre for Rare Diseases is based at QEHB, within the Institute of Translational Medicine which is dedicated to developing and implementing ground-breaking treatments, technologies and techniques to benefit patient care.

A team from the Centre for Rare Diseases are conducting research into Primary Hyperoxaluria, specifically the deficient enzyme, which is causing the overproduction of oxalate in Edward’s body. The team are hoping to find a way to orally replace the enzyme which would mean that patients like Edward didn’t have to receive a liver transplant.

Nicola has so far raised an incredible £8,000 and still hopes to raise even more money. Nicola said: “The support we’ve had is incredible and I think it’s not only because Edward’s story has touched people’s hearts but because people can see exactly where their donations are going.

Before her haircut, with baby Edward and his big brother Harry.

“Having a close friend in a situation such as this you feel so powerless and just want to be able to do something to help. Supporting the Primary Hyperoxaluria research team has given myself, and all of Edward’s family and friends, the opportunity to show our love and support and help us feel like we are doing something useful.

“It’s comforting to know we are supporting the team that are researching his condition and could potentially have a huge impact on his future well-being. Sara is a truly remarkable woman who I love dearly. She has been a rock through all of this and always puts everyone else before herself.”

Nicola decided to have her head shaved on Edward's six month birthday, exactly three months after he was admitted to hospital. Nicola was surrounded by friends and family for her haircut, and her locks have been donated to the Little Princess Trust, which makes wigs for children being treated for cancer.

Nicola, pictured after her haircut, with her son Spencer. 

Speaking of her haircut, Nicola said: “I love my new look and I’m very proud of what it represents. Fortunately, my sons Spencer and Cameron agree!”

Sophie Carroll, Senior Fundraising Officer at QEHB Charity, said: “Our thanks go to Nicola for her incredible fundraising efforts. She has raised such an amazing amount of money, which will help the team in the Centre for Rare Diseases.

“The Charity is proud to support the work of the Centre for Rare Diseases, the research that takes place in the Centre has the capacity to save lives and change the way that rare diseases are treated.”

You can donate to Nicola’s JustGiving page here.

Back to news