WHEN a child grows up without their father it can be hard keeping their memory alive.
Samantha Fulker loved her father and remembers feeling safe and happy in his care.
She was only able to enjoy two Christmases with her Dad and when she was just two, Robert Terence Fulker died – and her mum told her he had gone to heaven to be an angel.
Samantha said it’s become “part of her life” that her Dad isn’t around at Christmas, but said big occasions like the festive season are harder without him.
Growing up, she believed he had died from a brain complication, but it was only a few years ago after bumping into one of Robert’s friends that she found out he’d contracted HIV.
It comes as the Infected Bloody Inquiry has closed for the year – proceedings will continue next year and are expected to last until June 2021.
Former Health Secretary Lord David Owen has said politicians and health chiefs alike need to “face up” to the scandal, which saw thousands of people infected with HIV and hepatitis C through contaminated blood in the 1970s.
Samantha, 32, is now fighting for justice for her dad, who was just 39-years-old when he died and the thousands of other people whose lives have been impacted by infected blood.
Robert was under the care of St Thomas’s Hospital in London and this year the family found that he was left in the dark about his diagnoses.
Samantha, who lives in Surrey said: “Not only was he HIV positive from 1985, he also had Hepatitis C, Dad was never told this and we only found out once we were provided with just 11 pages found in a cupboard at Guys’.
“We have been told that his records have been destroyed”, she added.
Samantha said most people don’t believe that she remembers her dad, but speaking to The Sun, she said she remembers him being there every day of her early years.
“I remember running and hiding in his lap when Nanny got the carving knife out. I remember feeling so loved and so safe and so happy.
“I remember one day he wasn’t there anymore. Mum told me he had gone to heaven to be an angel.
“I asked if we could go to heaven too. She said we weren’t ready yet but he’d be there waiting for us when we were. I had a toy phone which I thought rang heaven.
I heard the word Aids. I thought it was a mistake and mentioned it to my Mum the next day.
“I called my Daddy a lot.”
From a young age Samantha believed her dad had died as a result of a problem with his brain.
In 2017, aged 29, Samantha bumped into some of his old friends, keen to hear more about her dad, she asked his friends what he was like.
Samantha, who works as a contract administrator added: “I heard the word Aids. I thought it was a mistake and mentioned it to my Mum the next day.
“Her face fell and she proceeded to tell me everything.”
Her dad was diagnosed in the summer of 1987.
Her mum explained to Samantha that in the 80s and 90s, there was a stigma surrounding Aids and that it was a “very different time”.
“My mum had been on the front line of protests, been on the TV, told our story to newspapers, wrote to Downing Street and health ministers.
“No one answered, no one cared, and nobody wanted to be associated with the word AIDS. She was told to stop and to shut up.”
The situation for Samantha and her family reached boiling point when Samantha’s nursery contacted her mum out of the blue.
She said: “My playgroup contacted my mum one day and ‘politely’ suggested that I was removed because after some of the other mums had heard our story, they were concerned that their own children would catch AIDS from me.
“My mum did not want this life for me and worked very hard to protect me. She is my hero.”
Samantha’s dad was had severe haemophilia, a rare condition which is usually inherited and affects the blood’s ability to clot.
When a new drug was made available to manage his condition he was given it.
The product, Samantha says, was made up of other people’s blood.
The medication was meant to make his condition more manageable – but instead it killed him and thousands of others.
Her dad contracted HIV from the blood and developed AIDS, which eventually killed him.
Soon other people started to come forward with their stories and Samantha’s parents went to the hospital.
It was here they were told that they should be worried. They had tests which both came back negative.
Samantha added: “This was a misprint, tested again, Dad was positive, Mum was negative. My dad’s life sentence began.”
After a long battle with the illness, Samantha’s dad died on September 23 1990.
Looking for answers
Since the day she learned of her father’s true condition, Samantha has been trying to find answers.
A few days later she watched a documentary on the BBC which showed other families who had been affected.
Samantha got in touch with those who had appeared and started to meet other campaigners.
The information discovered in the programme meant that an investigation could be opened.
Through minutes recorded in Department of Health briefings, it was found that people had been told to not share the information that patients had been infected.
What is severe haemophilia?
Samantha’s dad Robert had severe haemophilia – but what is the condition and what are the symptoms?
The condition leads to frequent haemorrhage and abnormal bleeding as a result of minor injuries.
Bleeding can also happen after a procedure such as a tooth extraction.
The NHS states that the “severity of haemophilia is determined by the level of clotting factors in a person’s blood”.
These are categorised as below:
- mild haemophilia – between 5 per cent and 50 per cent of the normal amount of clotting factors
- moderate haemophilia – between 1 per cent and 5 per cent
- severe haemophilia – less than 1 per cent
Without treatment – those with severe haemophilia can develop serious internal bleeding, soft tissue bleeding and joint deformity.
In the early 1990s victims families were ‘offered’ an ex-gratia payment of £20,000, in exchange they were forced to sign a document stating that they would not pursue this case any further.
The new findings essentially cancelled the document out due to the fact that officials had not been transparent with patients.
They revealed that a case could be opened and the Blood Inquiry started.
“To begin I was all guns blazing, so absolutely devastated at what only had happened to my daddy but so angry and hurt by the way our family had been treated.
“And this time, my mum wasn’t fighting alone, there was a huge huge family of us.”
Living in hope
While Samantha wanted to help, her mental health took a hit and she said she became filled with “so much sorrow”.
“I’d ask the same questions in my head over and over, why my dad?” she questioned.
“Who made the choice to let this happen? Why not tell them what they had done? How on earth was this allowed to happen?”
Samantha said she still has good days and bad days, but is helped through by her family and other campaign members she can talk to.
She added: “I am living in hope that the peeople responsible for my father’s death will finally be held accountable and have to answer before a judge.
What are the symptoms of HIV?
Most infected people experience a short illness, similar to flu, two to six weeks after coming into contact with HIV.
These symptoms, which 80 per cent of infected people experience, are a sign that their body is trying to fight HIV. They include:
- Sore throat
- Body rash
- Joint and/or muscle pain
- Swollen glands
After this illness, which normally lasts one to two weeks, HIV sufferers will have no symptoms for up to 10 years – during which time they will look and feel well.
However, the virus will continue to cause progressive damage to a person’s immune system.
Only once the immune system is already severely damaged will the person show new symptoms. These include:
- Weight loss
- Chronic diarrhoea
- Night sweats
- Skin problems
- Recurrent infections
- Serious, life-threatening illnesses
“I want to make him proud by being there when this happens, and allow him to finally rest in peace with the justice he and so many others deserve.
“To me, the inquiry means answers, it means that AIDS is no longer a dirty word, it means not flinching when someone makes an inappropriate AIDS joke.
“It means understanding and awareness from others of what happened, and this disaster is recognised for what it is: completely avoidable.
“My dad was robbed of his life, how had nobody been held responsible for this yet? “
Samantha said she had a special bond with Robert, despite only being around for two years of her life, as he took care of her from the age of five months when her mum returned to work.
“We became inseparable and built an incredibly special bond. My mum calls it our mutual admiration society for one and other,” she said.
“I am so very grateful for that time we had together before he was taken.
“I cannot imagine being given a life sentence at such a young age and cannot even begin to comprehend what he went through knowing our time was so limited and that he was leaving us.
“There is a huge pain in my heart which will never go. I get comfort from knowing he is always around me somehow.
“Everyone that knew him tells me how absolutely wonderful he was.
“How handsome, funny, happy and friendly. This fills me with so much happiness and pain, that we had so little time together and I would give anything for just one more day with him.”
Samantha said her dad loved music and had a substantial collection including records from the Beatles, Rolling Stones and Eric Clapton.
He also loved cars, and Minis especially.
“He was very into fashion, the latest trends, hair do’s. He owned cowboy boots and I have a cowboy boot keyring on me at all times.
“We are in regular contact with his best friends which I find really comforting.”
While Samantha said she was lucky that her mum moved forward with her life, and their family grew, the pain is still there.
“I have a younger brother and two younger sisters that are in full support of our fight for justice.
“I also have a wonderful step dad who took me on as his own from a young age and he, nor his family have ever treated me any differently. They stand with us in our fight for justice.”