The family of a nine-year-old Penicuik girl, who suffers from a rare condition, has urged people to continue to raise funds for the newly-named Edinburgh Children’s Hospital Charity.
When she was four, Leah Farrer’s daughter Áine McDermott was diagnosed with congenital central hypoventilation syndrome. The condition affects the central and autonomic nervous system which controls many of the automatic functions in the body. In Áine’s case it is the inability to control breathing during sleep.
Áine was taken to the Royal Hospital for Sick Children in December 2012, where she was taken to intensive care. She now has returned home and uses a life support machine to sleep but still attends the hospital on a regular basis.
During this time, mum Leah, experienced first hand the vital work that ECHC does for young patients and their families, enabling the family to have a more positive hospital experience and helping them to cope with the anxiety over her condition.
Her praise comes as it was revealed the ECHC has become the new name for the Sick Kids Friends Foundation – and the move coincides with the decision to rename the Royal Hospital for Sick Children, which the charity has supported for 25 years, as the Royal Hospital for Children and Young People (RHCYP) when it relocates to a new purpose-built building in early 2018.
Leah said: “I can’t imagine how much more difficult Áine’s hospital stay and visits would have been without the work of the ECHC.
“The work it does is just amazing and I can’t give them enough credit. The charity really changes a child’s day. We can’t thank the staff enough.
“Changing the name is a great decision, Áine is not ‘sick’, she is well and living a normal life but still needs to attend the hospital. A lot of the children that regularly visit the hospital aren’t ‘sick’ so the new name represents that.”
Roslyn Neely, CEO of the ECHC, said: “Through the amazing support and fundraising of many, many people, we’ve supported the work of the Edinburgh Children’s Hospital for 25 years. But with the hospital changing to a new name, we felt this would be a positive opportunity to also update our own name.
“Aside from our name, nothing will change in terms of the work that we do. We continue to be a grant giving organisation which exists to transform the experiences of children and young people in hospital so that they can be a child first and a patient second.
“The clinical work of the hospital is world class and often ground-breaking. However, we rely completely on the public for all our donations and we still need support to help us provide the magical extras to benefit the hundreds of thousands of babies, children and young people who will be patients over future decades.”
In 2013, ‘Team Áine’ was created by Áine and her four siblings, Finn, Ruari, Conal and Erin, all headed by Leah. With the arrival of the new hospital they wanted to leave a lasting legacy so that in years to come many children would benefit just as Áine had.
Together they fundraised through various activities including, kiltwalks, skydives and bungee jumps, raising an incredible £41,000 for a playroom in the new hospital, making the total amount raised by the family an astounding £80,000.
Leah added: “Áine spent almost a year in the hospital so being able to stay close by was extremely important as I didn’t want to leave her on her own. I could be downstairs in two minutes if the doctors ever called.
“This wouldn’t be possible without the use of the charity’s parent’s accommodation that I stayed in for the first three weeks.
“The ECHC drop-in centre is also just wonderful as not all of Áine’s siblings were allowed on the ward. It provided a place for them to be together and play with each other in a non-hospital environment.
“Thanks to all the different events and activities Áine also never felt like she was missing out while in hospital. A particular favourite for her was the Clown Doctor which really brightened her day.
“A lot of focus is on the children when they are in hospital but ECHC really supports the parents as well. Either with a massage, talking to a stranger about nothing over coffee, or small things like having a clean clothes and a toothbrush.”
Now having returned home, Áine uses a life support machine while she sleeps and regularly attends the hospital. Since then her family have been keen supporters for the charity and regularly fundraise to say thanks – and they are urging others to use the name change as a driver to support the ECHC.
The ECHC rebrand will better reflect the changes at the new hospital, which will now treat young people up to the age of 16 - previously it was up to 13 years - as well as providing child and adolescent mental health services.
The charity recently reported it had had a record-breaking 2016, smashing its target for donations to soar past the £1.8m mark, as well as paying out £3,180,815 in grants – the largest amount ever paid in one year.
The majority of the £3 million donated has been used to fund a package of art and therapeutic design projects at the new hospital at Little France – the largest programme of its kind in the UK.
For more information on Edinburgh Children’s Hospital Charity, please visit www.echcharity.org