'Nurse changed our lives when our daughter was ill'

Helen and Gary Brame were supported by a Roald Dahl nurse when their daughter Ada (far right) was unwell

Sunday would have marked Ada's third birthday.

The little girl from Ipswich died in September after she was diagnosed several years ago with a rare condition that affects the brain, spinal cord and immune system.

Her parents Gary and Helen Brame described their daughter as "wonderful" and said, while they were devastated, they were now at peace.

They shared Ada's story to highlight the "amazing support" they were given by a Roald Dahl nurse throughout their journey.

When Ada was coming up to her first birthday, her parents noticed something was not quite right.

"We organised a one-year birthday party with all the children and we actually had a joint photograph of them all together," Mrs Brame, 34, explained.

"All of them could sit up apart from Ada who kept falling forwards.

"It really brought it home that there was something seriously wrong with our child.

"We needed to do something."

Roald Dahl nurse Lucy Broom was assigned to help with Ada's care

"From the time we first started noticing something wasn't right, it was a year before we had a confirmed diagnosis," Mr Brame, 38, added.

Doctors told the couple Ada had Aicardi-Goutières Syndrome and Mrs Brame said the hospital soon became their "second home".

A year into various treatments, the family was introduced to Lucy Broom, a Roald Dahl nurse at Ipswich Hospital who specialises in care for children with medical complexities.

She was assigned to Ada's care and supported the whole family through their appointments and treatment.

She explained families were often overwhelmed through the process.

"They've already got so much on their plates, actually spending time with their little one is the most important thing," she said.

"You build up really special relationships... you get to know the patient and their family and in turn that helps you meet their needs."

In the UK there are about 150 Roald Dahl nurses caring for about 36,000 children.

They are specialist senior nurses and are established in hospitals by the Roald Dahl's Marvellous Children's Charity.

'Everything changed'

The couple agreed Ms Broom had made an indescribable difference to their lives.

"Right from day one when Lucy came into our lives, everything changed," Mr Brame said.

"She was at every clinic appointment with us, so, if we had questions afterwards, rather than have to email consultants, we could call Lucy and she could either give us some more information or give us a little more understanding for some of the terms that were used."

"We know first hand what our journey was like without a Roald Dahl nurse and what our journey was like with a Roald Dahl nurse," Mrs Brame added.

"We will never be able to thank Lucy enough for what she did for us as a family."

Ms Broom said she saw her job as a "privilege"

Sunday would have been Ada's third birthday and the family are facing their first Christmas without her.

Mrs Brame said they did not know how the festive period would be without their daughter but they had come to terms with what had happened.

"We are, in a way, at peace with everything because we had the amazing support from Lucy, from the people at the hospital, from the hospice," Mrs Brame continued.

"Everybody was so honest with us that we got to do some incredible things with Ada that we would never have dreamed possible and she had such a fulfilled life.

"She's always with us."

Ms Broom said her role was a privilege.

"Not every hospital has Roald Dahl specialist nurses, so the more money that the charity can bring in, the more families will have access to a Roald Dahl nurse," she added.