After watching her daughter succumb to the cruel, painful illness, Jacqueline Farr dedicated her life to raising awareness, writes Stephanie Bell
Jacqueline Farr did what no mum should ever have to do and held her beautiful 19-year-old daughter Jessica in a loving embrace as she passed away in hospital from Crohn’s disease just four weeks ago.
Not once since Jessica was diagnosed at the age of 16 did Jacqueline, who lives in Lisburn, suspect that the condition could so cruelly cut short her only child’s young life.
To warn others and highlight the need to take care of yourself when diagnosed with Crohn’s, she has bravely found the strength to share Jessica’s story.
“My life is just ruined, my heart is broken in pieces and I just don’t know how I am going to live without her,” she says. “I just want her to come through the door. I am so, so broken and so sad, she was all I lived for.
“It never ever entered our heads that this could kill Jessica. In May she insisted we go out for a meal for my birthday and just eight weeks later she was gone. It’s just unbelievable.”
Jessica was a typical teenage girl who lived for music and singing. She was so passionate about singing and so determined to become a singer that her mum had taken her to auditions for The X Factor and Britain’s Got Talent.
She taught herself to play the keyboard and was studying music at college in Lisburn and then in Belfast, but had to drop out because of her illness.
Like most young women her age, she loved to party with her friends and adored fashion and make-up.
As a single mum, Jacqueline (56) lived for her daughter and encouraged her every step of the way in her dreams to become a singer.
Tragedy struck when at the age of 16 Jessica was diagnosed with Crohn’s disease. She had been ill for some months and Jacqueline had taken her to the doctor and hospital several times only to be told she had a virus.
It was only when a very worried Jacqueline insisted that her daughter be admitted to hospital that she was finally diagnosed with Crohn’s disease – a condition that neither mother nor daughter had heard of before.
Crohn’s is a long-term condition that causes inflammation of the lining of the digestive system.
People with the disease sometimes go for long periods without showing symptoms or showing very mild symptoms, and periods of remission can be followed by periods in which symptoms flare up and can become particularly troublesome.
The exact cause of the disease is not known and there is no cure. Treatment is available to try and stop the inflammatory process, and in extreme cases surgery may be required.
Jessica’s early symptoms developed out of the blue when she found herself going to the toilet more frequently and suffering severe pain in her stomach, which put her off eating.
Her mum says: “She would have been screaming with the pain and had stopped eating because she was frightened of the pain. I brought her to casualty a few times.
“They thought she had irritable bowel syndrome or a virus and always sent us home with medication.
“It had gone on for about six months. She had lost a stone-and-a-half and was in terrible pain, being sick and couldn’t even keep water down. I took her to casualty at the Lagan Valley Hospital and refused to take her home until they did something. It was agony for her to go through, and as a mother it was killing me to see it.”
Jessica was admitted and tests revealed she had Crohn’s. She was prescribed steroids, which is the standard treatment for controlling flare-ups.
“The consultant told me it was becoming more common in young people because of exam stress and kids feeling under pressure to do well at exams,” Jacqueline says.
“Jessica didn’t really stress about exams, but her father and I had split up and I didn’t cope well and I wonder looking back if that stressed her. I think it is important for parents to know that stress in teens can cause it.”
The steroids appeared to help, and Jacqueline was relieved to see Jessica start to lead a more normal life again, going out with her friends and trying to continue with her studies.
She suffered occasional flare-ups and at Christmas last year was so ill that on Boxing Day her mum took her to the Royal Victoria Hospital in Belfast.
She had been so sick and was so weak that she was kept in for 11 days, during which she was treated for dehydration and had more tests.
Jacqueline says: “When she left hospital she was bouncing and seemed to be back to her old self again. Never for one minute did I think that this disease could take her from me.”
Shortly after she left hospital, Jessica suffered another flare-up and her medical team decided to try her on a new medication, Infliximab, which she had to receive intravenously every six weeks as an outpatient.
Initially it appeared to make a huge difference to the quality of Jessica’s life. However, when she developed a chest infection around May she had to miss her medication because she could not take it while fighting a virus.
The next time she went to get it, she suffered a severe reaction and found it difficult to breathe.
Her mum says: “Jessica should have had the flu injection, but forgot about it. I would like to emphasis to anyone with Crohn’s how important it is not to miss the jab or any medication. They did manage in the end to give her the Infliximab, but it really scared both of us when she couldn’t get a breath. She had another flare-up in June, but she recovered and seemed to be doing well.”
Just a few weeks before she died, Jessica moved into a new flat of her own and was hugely excited to have her independence.
Her mum used any money she had to help her decorate her new home to her taste and life seemed good.
In fact, both mother and daughter had been through such a difficult time that Jacqueline had decided to treat herself to a week’s holiday with her best friend.
She could never have guessed how suddenly and dramatically Jessica’s condition would change during that short break.
Jacqueline says: “I didn’t know whether to leave her or not, and everyone persuaded me that I needed the break and I should go.
“I went on holiday, but I was worried about her. The night before I was due home I got a phonecall to say that while in her granny’s house Jessica had haemorrhaged and had been rushed to hospital.”
Jacqueline immediately arranged to fly home and went direct to the Royal Victoria Hospital, where she was told the alarming news that Jessica had developed septicaemia and her organs were starting to shut down. It was July 5.
Doctors performed surgery to remove her large bowel as the only way to save her life. Jessica came through the surgery and was moved to intensive care.
What followed were a tough couple of weeks in which Jessica initially appeared to be on the road to recovery, only for her to suddenly deteriorate once more.
Jacqueline says: “She had been moved out of intensive care the next day and she seemed to come round.
“She was upset that she had to have surgery and had a stoma bag, which is something she dreaded, and I tried to reassure her about it.
“On the twelfth day after surgery I got a call from the nurse who looked after her to say that she was back in intensive care because her heart rate had risen and her temperature was up too.
“I left the house immediately. She was on a lot of antibiotics and feeling really terrible. The next day she was sedated and her wee body had started to swell and I was told her liver was failing.
“They did a brain scan and told us that her brain had swollen so much it had cut off the blood supply to her head and she was brain-dead.
“I don’t know whether it was a mother’s intuition, but I knew I had lost my daughter two days earlier.
“We had to give permission for the machines to be switched off. Before she took her last breath I just leaned my face over to her and put my arms round her and told her that she was not going to pass over on her own and told her not to be afraid.”
Jessica’s devastated friends, who also had no knowledge of Crohn’s disease before Jessica’s diagnosis, are organising a fundraising charity night in her memory in Bar 15 in Belfast in October, through which they hope to raise awareness of the condition.
Jacqueline says: “Jessica was so full of life and she suffered so much because of her illness. My life is just ruined. I am lifting her wee clothes and sniffing her wee perfume and everything I go to do she is there.
“I bought her wee scarves with music notes on it because she loved music and she loved a cup of tea, and I have her wee mug which also has music notes on it.
“I just keep expecting her to come through the door. I can’t imagine how I am going to cope without her. It is a very cruel disease and I don’t think people realise how serious it is or how important it is to look after yourself when you are diagnosed. I hope this helps to raise awareness.”