Damien and Adele Elliott’s lives changed forever when their sons Marc and Matthew were diagnosed with the rare genetic illness Adrenoleukodystrophy (ALD).
The rare, inherited disorder leads to progressive brain damage, failure of the adrenal glands and eventually death.
The Fermanagh couple are currently involved with a campaign to raise £2m for a children’s MRI Scanner at the Royal Hospital in Belfast. The cause brings together four local charities who believe that without a dedicated children’s MRI Scanner, many children who would benefit are unable to have this scan. Instead these children undergo different types of investigation which can be invasive or involve radiation.
The Elliott’s eldest son Marc passed away in August last year and the family who are still grieving his loss, have to make the trip from Fermanagh to Belfast every couple of months so that their youngest son Matthew can receive MRI treatment, but for now it has to be through an adult MRI machine.
Medical research shows that it is safer to diagnose and treat children with a specifically designed scanner, without that it can involve treatments that are invasive and involve radiation.
Matthew’s mother Adele believes that this has meant one more thing for the family to worry about.
“The situation at the moment is because he has to use the adult machine, it’s just an added stress for him and the whole family. If the children’s hospital had a scanner that was designed specifically for children he’d only have to be sedated.
“It’s horrible to see him lying there like that, you can’t even pretend he’s asleep and tries to fight getting the anaesthetic. You never know how he’s going to react with it. It’s very stressful for his body and on top of everything else it scares the living daylights out of him and us.”
After the heartbreak from Marc’s death Adele and her husband know all too well how things can deteriorate very quickly.
“When Marc was originally diagnosed we never knew anything about the illness, we were threw in at the deep end. Marc was diagnosed quite late on that why it’s so scary with Matthew. We’re fully aware about what the outcome could be. You’re constantly thinking, what are the results going to be, is he going to come through this.
“It’s not until sometimes and we sit in the house after we come home from one of his scans and we say to each other: ‘do you actually believe what happened today, what our child had to go through?’” she said.
With around £500k raised so far, Adele knows there is still a long way to go.
“It feels like you’re never going to get there. Two million pounds is a lot of money.
“We know from two years ago when Marc was diagnosed with the illness, we thought our only chance was getting Marc to America and that was going to cost £80k.The town we live in was brilliant at coming together and helping us out, but you weren’t getting anywhere near that money, so I can’t even begin to imagine what £2m would be like to raise.
“But we’ve decided now that we’re going to keep on fundraising and keep on donating the funds to the MRI scanner appeal.”
Charitable and voluntary donations to the trusts can come from a number of sources including former patients, clients and their relatives, as well as from specific charitable campaigns.
The £3.5m state-of-the-art Physiotherapy and Sports Medicine building at Musgrave Park Hospital represents one of the largest ever charitable donation to the Northern Ireland Health Service. Completed in 2005 it was funded by the hospitals charity partner the MITRE Trust.
The statistics obtained by The Detail show that charitable giving hasn’t been completely immune to the recession.
In the Western Trust the amount of charitable giving in 2007/08 reached £441k but by 2009/10 it had fell to £332k. Similarly in the Northern trust in 2007/08 the total amounted to £455k but by 2009/10 it was £437k. Meanwhile in the Belfast Trust, while Donations level were significantly higher than other trust, in 2009/10 the amount fell from £890k compared to almost £1.5m donated in 2007/08.
Sandra and Keith Emerson from Portadown lost their bay son Harry last year and since then they have raised almost £13K to the neonatal unit in Craigavon Area Hospital. Mrs Emerson believes that while their lives have fallen apart like any parents who lose a child, campaigning for donations was something that she and her husband felt strongly about.
She said: “Our beautiful baby Harry James was born on Monday 29 March 2010 at 26 weeks and 1 day and he weighed just 750g. He was admitted immediately to the neonatal unit. Without the neonatal unit we would not have had six precious weeks with him.
“When we lost Harry we knew we wanted to thank everyone for the love, care and attention the unit had showed him. We hold the staff in the unit in the highest esteem and know that we could not fault them in any way,” she said.
Seamus McAleavey, chief executive from NICVA, believes there are clear advantages in this type of funding.
“When you think that the trusts hold somewhere in the region of £50m, these funds have the potential to be a really important and critical piece of investment," he said.
“It can be very strategic money in that it can make things happen. It allows the public to take the power into their own hands, not to be passive recipients of services from health, but actually try to influence change. ”
At the moment each trust is preparing its accounts up to 31 March 2011 and the information on the latest charitable donations figures will not be available until June. However, Frances McCandless, chief executive of the Charity Commission, says she wouldn’t be surprised if the figures around charitable donations continued to grow.
“The statistics show that millions of pounds are being given by health charities and why that doesn’t surprise me is that people feel so passionately about these issues. This is one area of the charity sector that often has affected people very personally and that’s why they want to give this money.”