AN EYEMOUTH family has pledged its support for the newly named Edinburgh Children’s Hospital Charity – and urged others to do the same – after revealing how it helped them to cope in their time of need.
Karen and Scott Purvis’ daughter, Isla, was first admitted to Edinburgh’s Royal Hospital for Sick Children 13 years ago after being born with Adams-Oliver Syndrome. Adams-Oliver Syndrome is a rare congenital disorder that causes abnormal skin development and malformation of the limbs.
In Isla’s case, as is common with many people with the syndrome, she was born without a section of skull and with no skin across the top of her scalp. Five years later, Isla’s brother Aaron was also born with the condition, with even more serious symptoms than his sister.
In 2011, Isla had tissue expansion followed by cranioplasty to have her skull and scalp repaired. The surgery was a success and Isla has since grown a full head of hair. Aaron had to undergo a tissue expansion surgery earlier this year and had a similar operation to his sister. However, due to an unfortunate complication, the plastic plate that was inserted over his cranium had to be removed.
Both children continue to regularly have consultations with medical specialists, treatments and checkups and during this time, Karen and Scott have experienced firsthand the vital work that ECHC does for young patients and their families and has commended the charity for enabling the family to have a more positive hospital experience.
Their 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.
Karen said: “The support they’ve given us throughout the kids’ treatment has been incredible. Some of what they do is so simple and straightforward but it’s so needed.
“We can never give back as much as they’ve given us but we’re certainly going to try. We want to raise money to support ECHC in every way, whether that’s helping them buy expensive medical equipment that they need or to simply help fund daily necessities like shower gel and hot water.
“We’d also encourage everyone to really support the charity – and use the new name to think about how they could raise funds and help much a difference to families.”
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.”
Karen said: “When our son was first taken into hospital we were able to stay by his bedside for one month because the charity fund camp beds for mothers to stay on the ward. .
“PJ’s loft – the parents’ accommodation provided free by ECHC – has provided us with a place to stay in the past, which was incredibly helpful. We could stay close to our children and also have somewhere to sleep, eat and shower.
“They take care of your basic needs, which can easily be neglected when you’re busy worrying about your children. Just having somewhere to sit down can make all the difference.
“Also, the way they take care of the children is amazing. They really manage to distract my children from thinking about being at hospital with ideas ranging from entertainment from Clown Doctors to arts and crafts. I’ll find Aaron saying ‘I think I’m going to see if I can finish my Xbox game today’ rather than worrying about the operation that he’s going in for.
“They do what they can to take away from the clinical environment, giving the kids Easter eggs and selection boxes to help prevent them from fearing the hospital.
“The Drop In Centre can be a great distraction and de-stressor for the parents, too. I’ve been taken in for a hand massage on a tough day and it really helped to calm and soothe me.”
Scott is an avid runner who collects sponsorship money for the ECHC with each race that he runs. He will be running the Stirling Marathon in May, followed by the Edinburgh 5K and 10K and the Edinburgh half marathon the weekend after.
Karen, too, makes great efforts to push herself to her limits to raise money for ECHC having completed a sky-dive and a shark tank dive – even though she’s terrified of both flying and sharks.
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 £3million 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.
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