‘If I didn’t have my Jessica’s dog and cat to look after, I really don’t think I’d be able to go on’
Jacqueline Farr's 19-year-old daughter died after complications from Crohn's disease. Now she is keeping her spirit alive by trying to help others
Most days Jacqueline Farr takes a chair to the cemetery and sits by her daughter Jessica's graveside just to feel close to her. It is just over a year since Jacqueline lost her beautiful 19-year-old girl and she says the pain of living without her is unbearable.
Jessica died in hospital in July 2016 from organ failure brought on by septicaemia caused by Crohn's disease.
Despite her struggle to carry on without her only child, Jacqueline has been raising awareness of Crohn's and now vital funds for what she hopes could be a cure.
In memory of Jessica, Jacqueline is helping raise money towards what will be the final push in a 30-year study in London to develop a Crohn's MAP Vaccine.
Having witnessed just how cruel a disease Crohn's can be, she says she wants more than anything to see an end to the suffering even though it will tragically be too late for her Jessica.
She has just staged a night at the races event and an auction to get the ball rolling. In addition, a JustGiving page has been set up after her friend, John Torrans, offered to run his 11th and last New York Marathon this year in memory of Jessica.
John (55) will also raise money for Crohn's & Colitis UK and the clinical trial for the MAP Vaccine headed by Professor Herman Taylor in King's Hospital in London, which is giving hope to sufferers all over the world.
Scientists around the globe have collaborated on the MAP Vaccine, which is currently in its final phase, with hopes that it will be able to prevent as well as treat and even cure Crohn's.
Jacqueline, who lives in Lisburn, paints a stark picture of her life now. She says life has not been worth living since she lost Jessica. Being able to raise awareness of Crohn's disease and help contribute to research is what is keeping her going at the minute.
"It is no easier a year on," she admits. "I have Jessica's cat and dog to look after, otherwise I wouldn't want to be here.
"And I have great friends and family who spur me on when I break down. I also went to the bereavement organisation Cruise this week and they are going to give me counselling. But I can't see anything ever taking the pain away.
"I am so proud of Jessica and always was, and I am so grateful that John has offered to run the New York Marathon in her memory and to raise awareness of this dreadful disease. I didn't know until after Jessica died just how many young people have a stoma bag."
Jacqueline says it was the parents of a friend of Jessica's who first told her about the work being done in London to find the MAP antidote.
"It is at phase 2 and they are hoping for a breakthrough in 2018, but they need funds and I am delighted that we are going to be able to help.
"We set up a JustGiving page just a month ago and already we have £1,400 and everyone is doing their best to raise money.
"It is too late for Jessica but she would have been so relieved and proud to help people. I saw the suffering she went through - it was horrendous and it would be great to see an end to it for others."
Jacqueline had no idea when Jessica was diagnosed with Crohn's disease at the age of 16 that the condition could so cruelly cut short her only child's life just a few years later.
A typical teenage girl, Jessica lived for music and singing. 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 (57) lived for her daughter and encouraged her every step of the way in her dreams to become a singer.
Jessica had been ill for some months before her diagnosis and Jacqueline had taken her to the doctor and hospital several times only to be told she had a virus.
Eventually Jacqueline insisted that the hospital admit her daughter and she was 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.
It affects an estimated four million people worldwide, including around 250,000 in the UK - and numbers are increasing, especially in children.
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 recalls: "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. She was 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."
On her diagnosis Jessica was prescribed steroids, which is the standard treatment for controlling flare-ups. 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 but at Christmas 2015 she was so ill that on Boxing Day her mum took her to the Royal Victoria Hospital in Belfast, where she was kept in for 11 days.
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. On July 5 last year Jessica collapsed and haemorrhaged. She was rushed to the Royal Victoria Hospital, where it was discovered she had developed septicaemia and her organs were starting to shut down.
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.
Her organs shut down and her heartbroken mum faced the agonising decision to have her life support machine switched off.
Jacqueline hopes the bereavement counselling will help her to carry on without Jessica. She says: "It has been absolutely terrible. Talking about it to raise awareness and now raising funds means she has left a great legacy behind her and I am so, so proud of her, I love her so much, it breaks my heart.
"I feel empty. I feel lost - as if I am wandering about in a desert and don't know where I am.
"It is as if a light inside me has gone out and part of me is missing.
"Twins are said to have that link where they know what the other is thinking or feeling and I miss that link with Jessica.
"Even her wee cat Storm and dog Pepsi still go into her room and lie on her bed as if they can't understand where she is either.
"I take a seat to her grave every day or every other day and just sit with her and the other day I had this sudden urge to just take her in my arms and give her a big hug.
"The house is so empty and so quiet as she always had her friends in and out. Her wee friends still message me, they haven't forgotten her.
"It would have been her 21st birthday next February and I'm dreading it, I have no idea how I will get through that."
Jacqueline's nephew soon hopes to auction a signed Ulster Rugby jersey on Facebook. In the meantime Jacqueline is hoping people will contribute to try and find a cure by going to justgiving.com/john-torransnym