Teenager Kirsten Edwards has spent the last five years in pain.
She was a normal, cheeky 12-year-old when she came home five years ago with toothache and mum, Julie Longmuir, thought she might be trying to dodge school.
But Kirsten went to bed ill – and was still there six months later. Kirsten, 17, has Wegener’s Granulomatosis, a rare form of vasculitis, which attacks her own organs.
“She was a perfectly healthy 12-year-old who’d never been in hospital, it was just horrendous,” said Julie, 48, a lead trainer and NVQ assessor at the Smartcare Teaching Care Centre, part of the Pendine Park organisation in Wrexham.
Kirsten has only 50% kidney function, holes in her lungs, is deaf because the disease has destroyed the bones in her ears and attacked the bones in her nose. Swollen joints make it painful to walk and although she has a standard wheelchair, she cannot use it independently.
So Julie’s kind workmates are organising a fund-raising rock night to try and raise money towards the £2,500 probably needed for a purpose built, made-to-measure wheelchair which Kirsten could operate without her mum’s help.
It was the brainchild of Ron Adams, who works as a support worker at Pendine’s Park’s Independent Living domiciliary care company. As a member of the AC/DC cover band The Swillers he approached other bands to see if they would help.
“It’s going to be a rock night at the Brymbo Cricket Club on February 19 with four other local bands, Marblehead Johnson, Blind Justice, Thunderpig and Revolver. Everyone is giving their services free. The Hells Bells Rock DJ and the club are free and KLS Lighting and Sound are also providing their services free.
“I was on a training course when I met Kirsten’s mum and we were talking about some things in life not being fair and I heard then about Kirsten. I thought that really sucks.
“I don’t know Kirsten but she needs this wheelchair for her dignity so that she can get about and meet her friends and it’s wrong she cannot get one.”
Audra West, a friend of Julie’s, who is the Registered Manager at Independent Living, she said: “Julie is a very friendly and bubbly person considering what she has on her plate, she just carries on although it can be very draining.
“We were looking at organising a fund raiser from Independent Living . At Christmas we helped with a meal for the homeless people of Wrexham and wanted to hold a fund-raising function in aid of dementia this year.
“Ron is in a band and he had met Julie on a course and came up with this idea for a music night and split the funds between a contribution towards Kirsten’s wheelchair and for an afternoon dance we want to organise for our clients with dementia.
“We are extremely grateful to all the bands and the lighting company for donating their time for free and also to everyone who has donated raffle prizes and the Brymbo Cricket Club for donating the venue.”
Single parent Julie lives in Llanerfyl, near Welshpool, and came from Scotland to Wales in 2004 to work as a Bupa care assistant.
Doctors only diagnosed what was wrong with Kirsten in April 2007, the day Julie had successfully applied to join Smartcare.
“I had just got the job and had to telephone my boss and say I’m really sorry but I cannot take the job because my daughter has just gone into the intensive care unit of Birmingham children’s hospital. I’d been told Kirsten might not last the night.
“They said we will hold the job open for you, they were absolutely brilliant with me. With my work involving assessing it means I can fit it in around caring for Kirsten.
“She lost her independence before she ever gained it,” said Julie. “To look at Kirsten you would not think anything is wrong, but she’s gone from being a healthy young girl into this nightmare, it’s horrible for her, after all she’s just a young girl of 17.
“Her schooling has been a nightmare too. She was on intravenous chemo’
while she was at Welshpool High School, now she takes it in a tablet every day. She had some tuition at home but when she went back they said she would need to catch up, but with this disease it’s not very good for the concentration span.
“I have been addressing key skills with her and hope she can get into a college course of some kind but she will not be able to unless they can stabilise her condition.
“The disease is very rare. Kirsten has been on the internet and talks to two other girls, in Canada and the USA, who have the same thing.”
Julie and Kirsten moved to a new home recently and now have a bungalow with a wet room for Kirsten.
“Kirsten can move around the house and if I take her in the car she could walk into the shop, but she says to me ‘Mum you don’t know what it’s like not being able to hear whether anyone is walking up alongside you or if you are in someone’s way’.
“But she’s in constant pain, she takes eight Tramadol pain killers a day on top of codeine and paracetamol and all her other medication.”
It is only when doctors get the correct cocktail of drugs that Kirsten’s condition will stabilise.
“Since last February she also has a second disease. She was so bad she could not get out of bed and it turned out to be ulcerative colitis. They say they can stabilise her condition but they have not achieved it yet.
“It does get you down sometimes. You have such plans for your children. I want her to be healthy and happy but that’s not going to be. You want to see them grow up and get married and have children, but even if Kirsten got married she may not be able to have children because of all the chemo’.
“Before she got ill she wanted to work with animals, but with her auto immune system vulnerable she might pick up things working with animals.
“You cannot help thinking why did this happen to me? You look around and think why my child? We have been on our own together a long time. I want Kirsten to be able to get out, perhaps attend a college course, and meet people of her own age, she needs to get out of the house to lift her spirits.
“She has a friend from Welshpool, Zoe, who has been absolutely brilliant, and her family, and have stuck with Kirsten, but so many of the youngsters she knew at school have just moved on and are now at college.
“But she’s been very brave and I’m very proud of her. Despite everything that happens to her she doesn’t complain. She doesn’t want pity. She is in pain every day.
“She has gone through a grieving cycle, she has lost everything, her hearing, her independence, her friends from school. You get very angry at times and think it’s just not fair.”
Tickets for the fund-raising rock night at the Brymbo Cricket Club on February 19 are £6. Food will be extra. The show, which includes a disco, runs from 7.30pm until midnight. For tickets ring 01978 365040 or call at Pendine Park Independent Living, at Caxton Place, Regent Street, Wrexham.
