NO parent should ever have to go through the trauma and heartache of losing a child.

As Donna Pace, from Weymouth, shares the story of her son Jamie's battle with a rare blood disorder, she highlights how saying goodbye to a loved one isn't the end to a family's suffering.

Donna is opening up about her depression and denial following Jamie's death, and campaigning for more awareness of the Anthony Nolan register, and a need for more countries to improve donor registration.

Donna's son, Jamie, was diagnosed with a very rare blood disorder, Fanconi Anaemia, in April 2005 when he was just six years old. He spent time at Great Ormond Street for treatment.

Donna said: "At that time, only five children in the country had the illness.

"Jamie was six and a half years old and I noticed heavy bruising and he was pale and too tired to get up for school. He had lost his appetite and so I took him to the doctors who said I needed to take him to hospital as he was very anaemic.

"That's when the nightmare started."

From that moment, Donna said everything turned upside down.

"I was trying to encompass being a mum to four as my husband worked full time. It wasn't just Jamie's well-being I needed to look after.

"I had a massive support network. The nurses and community workers became our second family. Jamie was in hospital more than he was at home."

Donna said the rare condition, which sufferers are born with, effects bone marrow, speech, language, hearing and limbs. Jamie needed a bone marrow transplant in order to survive.

Donna said: "During that time we had three children, four with Jamie. They all got tested to see if they had the condition or to be a match."

Sadly, the siblings weren't a match. Donna said doctors searched the Anthony Nolan donor database for a potential bone marrow donor but again found no matches.

As Jamie's father is Maltese, Donna said doctors in London contacted Malta authorities to see if there was a match there.

Donna said: "They looked to Malta but they came back and said there was no such thing or register in Malta."

The family's only hope was a 'mismatched unrelated' donor and Jamie had a transplant.

Donna said: "He survived and I was able to take him home for Christmas in 2008 which was a massive shock. He was well for about nine or 10 months and he started secondary school."

But tragically, after a period of feeling better and getting to live a normal childhood, Jamie's blood counts started dropping at a time when he was being bullied at school. It wasn't the only shock the family would receive.

Donna said: "The hospital thought he was relapsing at the end of 2009 and then at the start of 2010 unexpectedly, I found out I was pregnant again.

"It was such a positive distraction for Jamie and he was so happy."

Donna said: "I was really nervous because I thought this baby could have the same illness and you think 'do I terminate?'

"Jamie was deteriorating and he went back into Great Ormond Street for a stem cell transplant. He was part of a clinical trial but he had relapsed and his body couldn't take any more. He was sent home – he was on borrowed time."

Donna said: "My son was born in August 2010, we called him Vito. It means life in Italian. Jamie was very nurturing. I feel like Jamie is living through him."

Doctors at Great Ormond Street tested Vito to see if he was a donor match for Jamie. He was, but it was too late.

Donna said: "We were told he was a perfect match – he was the same tissue type. But Jamie was on palliative care and had pneumonia.

"That was a bitter pill to swallow. The look in his eyes – that sparkle, was gone."

Sat in her new home in Weymouth, Donna is surrounded by memories of Jamie, including a sofa he used to lay on.

Donna said: "This is the last sofa he sat on with his new born brother. I feel like Jamie is living through him. By December 2010 Jamie was bedridden. I would lay with him. I stayed by his side and two workers came and his temperature was reading 41 degrees and there was nothing we could do about it."

Five years on, Donna is still struggling with the aftermath of losing her son.

She said: "I cried so much and for five years I was in denial and just kept myself busy. I felt guilty – like I should have done more. It was just a sense of disbelief.

"I recently quit my job because I suffer from PTSD and I'm finding it a struggle.

"I'm not coping with Jamie's loss. It has so much impact on my daily life. I'm registered with the community mental health service – but there's such a taboo."

Donna decided she needed to focus on something to help, and has since spent time signing up to a course and campaigning to help others.

She's signed up to an Open University course in Health Science to learn and understand more about the body.

Donna said: "I want to turn a negative into a positive."

From contacting local MPs and the Maltese government to raise awareness to fundraising for Anthony Nolan, Donna is determined to help others in memory of Jamie.

The mother of six said one of her favourite memories is the regular trips to a coffee shop she would make with Jamie – it's the smallest moments that make the biggest memories.

Donna said: "We would go to Costa to have hot chocolate and muffins and that was our routine. We built up this relationship within a few years that take most parents a lifetime."

To find out more about the Anthony Nolan, visit anthonynolan.org