On the morning of Friday December 8 last year, Newtownards couple Nadine Chambers and Ryan Hughes experienced every parent’s worst nightmare when they found their healthy, happy 18-month-old daughter Alex unresponsive in bed.
After being rushed initially to the Ulster Hospital in Dundonald, and then on to the Royal in Belfast, little Alex was placed in a coma and Nadine and Ryan were told she had suffered a catastrophic brain bleed. At one stage it was feared she may only have 45 minutes left to live.
What followed was weeks of extreme anxiety for Ryan and Nadine, who at this stage were living at the hospital as medical staff fought to help their precious little girl.
“Home was where Alex was so the hospital became our home,” Nadine told The Irish News.
“I remember one doctor telling us ‘we’re very much in the woods, it’s hour by hour’.”
During this horrific period, one organisation was working tirelessly behind the scenes to provide Nadine, Ryan, and a host of other families with the crucial help and support they needed as their children received critical medical attention.
That organisation was then known as ‘Helping Hand’ but the charity, which fundraises exclusively for the Royal Belfast Hospital for Sick Children and is wholly reliant on donations, has now begun a new chapter, adopting an apt new name inspired by those it serves – Little Heroes.
According to chief executive officer of the charity Mary McCall, the new name was chosen because it resonates with the spirit of the thousands of children like little Alex that pass through the hospital doors each year.
“Helping Hand did wonderful work but it was of its time,” she said.
“Little Heroes allows us to put the children at the centre of the name and make a renewed commitment to them while paying tribute to their resilience and courage, as well as the paediatricians and dedicated healthcare professionals who help treat them – ordinary people doing extraordinary work every day.”
And Little Heroes, which was officially launched on Thursday, helps this extraordinary work in many ways – raising funds for hospital facilities and equipment, helping with major incident training for emergency crews, providing moments of relief for children and families on the wards through a ‘giggle fund’, funding innovative medical research and providing care and support for families, to name just a few.
It was the care and support that proved so crucial to Nadine and Ryan.
Nadine said the charity helped to provide everything from equipment such as ‘buddy beds’ – armchairs that fold down into beds so parents can sleep beside their children on the wards – to the funds for clinical psychologists to help support families of ill children.
“Even just a parents’ room and things like facilities to shower,” she said.
“It’s important to look after yourself – you have to eat, you have to shower, you have to sleep - because if you aren’t looking after yourself, you can’t help your child.”
Thankfully, just before Christmas last year, Alex woke from her coma but then the hard work of getting her back on her feet started.
Because of the damage done to her brain, she could no longer eat, speak or even hold her head up, so she remained at the hospital for weeks undergoing a range of therapies.
Again, many of these were provided thanks to the help of funds from charity.
“They helped provide Makaton training, physical therapy, speech and language booklets for myself and Ryan,” Nadine said. “Even facilities for Ryan to work from the hospital so he didn’t have to leave and, because we didn’t have to leave, it meant we could also help to work with Alex so she progressed physically much quicker.”
Explaining how the charity works hand-in-hand with the health service, Mary McCall adds: “While the health service is able to provide play therapists for example, the charity can help provide equipment and materials for the play therapists to use in their sessions with children.”
And, due to ever increasing pressures on Northern Ireland’s health trusts, it could be said the additional money provided by the charity is more important than ever.
But, according to Nadine, this isn’t just about an NHS crisis.
“What happened to us can happen to anyone and those who donate to the charity have the power to help the children that it does happen to and help their families support them,” she said.
“That hospital was our home and without Little heroes it wouldn’t have been and Alex wouldn’t be where she is now if it hadn’t been for Little Heroes.”
And where is little Alex now, almost a year on from that December morning?
Thankfully, she’s out of the hospital, at home, eating, drinking, speaking, making new friends, and getting into all the usual kinds of fun a two-year-old does.
She’s even raising lots of money for Little Heroes in the process, including through a sponsored walk in her special walker which was only supposed to be around five miles but ended up being closer to 11.
“Because Alex didn’t get to have a Christmas last year, the decorations were up on November 1st this year,” Nadine said. “We’re going to have an extra long Christmas for her.”
And Little Heroes is continuing its vital work with its ‘Sponsor a Sparkle’ campaign, which allows members of the public to sponsor a virtual ‘sparkle’ on the charity’s Christmas tree, “with every sparkle lighting up the lives of children and families at the hospital who are facing challenging times”.
“We look forward to the charity bringing a lot of joy to the hospital,” Mary McCall said.
:: To learn more about Little Heroes, donate or to get involved, visit www.littleheroesni.org.
