IT TRULY is every parent’s worst nightmare. Musselburgh couple Frank and Lorraine Cusack were faced with the brutal reality that their three-year-old son Adam had just hours to live after contracting an extremely rare form of meningitis – one so unusual that it was the first recorded case at the Sick Kids hospital.
Just a few days earlier, the Loretto RC Primary pupil had been full of beans, playing on his trampoline in the back garden with 42-year-old Frank, before suddenly feeling unwell.
Doctors initially put his symptoms down to a sickness and diarrhoea bug, but the following morning Adam’s skin turned a mottled purple-blue and his panicked parents struggled to wake him.
Less than an hour after making the 999 call, he was on a life support machine, with Frank and Lorraine being told he was the sickest child in the hospital.
Fast forward five years and Frank, who runs a car valeting business, and Lorraine, 41, a principal primary teacher at St Andrew’s Primary in Gorebridge, still have to pinch themselves to believe that their son is alive.
And they know exactly who to thank – the Sick Kids Friends Foundation (SKFF), which celebrates its 20th anniversary this year.
They are among thousands of families to have benefited from the care provided at the Sick Kids hospital, for which the SKFF has raised millions of pounds over the last two decades.
The Evening News has joined forces with the SKFF to mark the anniversary, and we will be working with the charity to celebrate its achievements and help make the 20th anniversary year its best ever.
Since it was founded in December 1992, the SKFF has smashed targets and raised a staggering £18 million for the Sick Kids hospital and related children’s healthcare centres – £14m of which was raised in the last decade.
Adam is one of many patients whose lives have been saved by staff at the hospital and the vital funds raised by the charity.
Blood tests confirmed that he had the rare meningitis strain haemophilus influenzae type B and D. As a result of a brain injury caused by the meningitis, Adam suffered a series of seizures, with his parents forced to watch helplessly as they shook his tiny body.
Adam, who celebrated his ninth birthday earlier this month, was in a medically-induced coma for 12 days, but despite all the odds – and the doctor’s worst fears – the determined youngster pulled through, leaving staff at the Sick Kids dumbfounded.
He was initially paralysed down his entire left side and had to learn from scratch how to sit up, crawl and then walk. But with the help of staff at the hospital and the SKFF charity, Adam was walking within eight weeks of being admitted to the hospital.
Frank says: “The time the staff spent rehabilitating him, giving him physiotherapy and showing him how to walk again, was amazing.
“The very first time Adam stood up himself was to see a clown doctor hiding behind a partition at the hospital, and the first time he walked on his own was to play a joke on one of the clown doctors.
“Things like the clown doctors aren’t just there to make the kids smile – there’s a clinical side to everything the Sick Kids does.”
The family are also full of praise for the Drop In Centre and PJ’s Loft parent accommodation, which provides extra rooms for parents whose children are being treated at the Sick Kids.
Frank adds: “The forgotten patients are actually the siblings. Our other wee boy Frankie, 11, who was six years old at the time, saw his mummy and daddy wake up and leave one morning and not come back for weeks. He would go to the Drop In Centre after school, and for a couple of hours a night we could maintain a family atmosphere.
“The Sick Kids hospital saves your child – the Friends Foundation saves your family.
“Our family would’ve been torn to pieces if it hadn’t been for that and the fact that PJ’s Loft gave us a room.”
After eight agonising weeks, Adam was finally able to go home – much to Frank and Lorraine’s relief.
To say thank you for everything the Sick Kids had done, Adam’s family and friends raised a staggering £25,000 for the SKFF in just four months in 2007, which was used to purchase physiotherapy equipment and to help with the running costs of PJ’s Loft and the Drop In Centre.
It remains unclear why Adam was struck down with the rare form of meningitis. As a result of the disease, he lost 25 per cent of his eyesight and has been left with epilepsy, having suffered around 150 fits over the last three years. But the resilient youngster still manages to play football and rugby every fortnight with local clubs – something his parents never thought they would have the joy of seeing.
Frank, who said he still suffers flashbacks to what was undoubtedly the worst day of his life in March 2007 when Adam was admitted to hospital, said: “Adam had 18 drips in at one point and nine electrodes on his head, as well as a ventilator keeping him alive.
“He still attends the neurologist every six months at the Sick Kids. He calls the hospital his second home and said he’s really happy when he goes there.
“Invariably, when he goes to the hospital, the things that happen are really horrible, like MRI scans, but he actually likes going.”
The SKFF has clinched four coveted national awards since it was established and has aided the treatment of around two million sick children.
And now it would like to thank the thousands of fundraisers, donors and volunteers, whose tireless efforts, time, generosity and determination have made all of its good work possible.
Maureen Harrison, chief executive of the SKFF, says: “Over the past 20 years, I am pleased to say that the charity has made an enormous difference to the experience of children and families at the hospital. Our work is all about innovation, support and working alongside – but independent of – NHS Lothian to ensure that precious funds donated by the public are well-used to supplement care for vulnerable young patients now and in the future.”
Highlights of the charity’s investment include money to establish a Children’s Clinical Research Facility and the hospital’s highly innovative Sat Nav for neurosurgeons.
Not only does the charity invest in new equipment and fund research, it has also implemented an Artist in Residence programme and established PJ’s Loft – the accommodation for parents at the heart of the hospital.
This year has seen the introduction of vital new equipment and in-depth research as the charity gets its 20th anniversary celebrations under way.
Funds are currently being raised for two new state-of-the-art ultrasound systems for the Sick Kids hospital, and the foundation invested £36,000 to provide an echo-cardiogram machine for St John’s Hospital in Livingston.
The SKFF also financed the introduction of the first UK hospital-based Changing Faces practitioner post at the hospital. Orla Duncan took up her post last month to provide support to children with facial disfigurements. The charity has also funded the creation of several staff posts to support families, and its Drop In Centre, which will be celebrating its seventh birthday this year.
Maureen says: “Raising £18m would have been impossible without all the generous people who have donated to us, so it is important that we make sure each fundraiser is thanked.
“Our gratitude goes out to individual donors and community groups who fundraise for us, and parents, companies, schools, nurseries and those who sponsor our supporters in marathons and every kind of sporting challenge.
“Together with the play specialists, nurses, surgeons, therapists and support staff, they have made an enormous difference to the lives of the children in our wards. Without them all, none of our work would have been possible.”
She adds: “We are delighted to have partnered with the Evening News to celebrate our 20th anniversary. It has been a fabulous 20 years so far and we could not have done it without our many wonderful volunteers and fundraisers from over the years. I am looking forward to seeing what this year will bring.
“With the help of the Evening News, we can make this a fantastic year for fundraising and help even more sick children across Scotland.”
Meanwhile, Dr Edward Doyle, clinical director at the Sick Kids hospital, said: “SKFF has played a key role in our hospital family over the past 20 years, and their contribution is appreciated by patients, families and staff.
“The charity’s fundraising efforts have allowed us to advance patient care in many areas and provide vital support to children and families during what can be a very difficult time.”
From baby steps to state-of-the-art care
1992: The Sick Kids Friends Foundation (SKFF) set up to support the work of the Royal Hospital for Sick Children in Edinburgh.
1995: Ultrasound equipment first introduced to the hospital. The following year SKFF spends £200,000 on most sophisticated piece of ultrasound equipment in the world at that time.
1997: Provision of the Family Support Centre and Chapel. The Chapel, now known as the Sanctuary, is constantly visited by parents and staff seeking a quiet place away from the busy wards.
1999: Provision of the first CT scanner at the hospital. Used to examine head injuries, it costs £150,000.
2003: Provision of PJ’s Loft parent accommodation. The £200,000 facility provides an extra seven rooms for parents whose children are being treated in the hospital.
2004: Provision of OR1 Operating Theatre system, which allows surgeons to carry out keyhole surgery on young children.
2006: Drop In Centre opens after the Evening News joins forces with SKFF and helps raise £100,000 in just five months.
2007: Replacement of the CT scanner with a new state-of-the-art model.
2009: Opening of the Children’s Clinical Research Facility. Sir Chris Hoy, left, launches the facility, which aims to improve treatment for children with leukaemia, asthma, cystic fibrosis and other conditions.
2010: Purchase of highly innovative “sat nav” for neurosurgeons. The £220,000 mapping system enables surgeons to carry out brain scans on babies and toddlers whose skulls are too soft to be fitted with the pins required for the procedure.
2011: Purchase of 3D TV to provide a welcome distraction
in treatment rooms.
THE Sick Kids Friends Foundation will host a series of special fundraising events to celebrate its 20th birthday this year.
A special art exhibition and sale, Postcards for Sick Kids 2012, will take place at city auction house Lyon & Turnbull from November 2-4, which will be followed by Carols for Christmas at St Cuthbert’s Church in Lothian Road on December 11, and a Christmas fair at Meadowbank on November 25. The charity will launch an awards programme in association with the Evening News later in the year, where honours voted for by the public will be presented to fundraisers, volunteers, hospital staff and patients.
Maureen Harrison, chief executive of the SKFF, says: “There are a lot of exciting things happening for us this year. We urge everyone to get involved.”
Details can be found at www.edinburghsickkids.org
SUPPORTING THE SICK KIDS
The Sick Kids Friends Foundation is currently raising funds for two new state-of-the-art ultrasound systems for the hospital. You can make a donation by visiting www.edinburghsickkids.org or calling 0131-668 4949