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Minister praises innovative spina bifida service “helping disabled young people grow”

Natalie Don, Minister for Children, Young People and the Promise visited the Royal Hospital for Children and Young People in Edinburgh on Wednesday to find out more about a project run by NHS Lothian and Spina Bifida Hydrocephalus (SBH) Scotland.

NHS Lothian’s Spina Bifida Transition Clinic, delivered in partnership with SBH Scotland, brings together all the services needed to enable a young person’s transition from paediatric to adult care and facilitate wider support with transition into adulthood. The Transition Clinic is the only fully integrated clinic of its kind for people with spina bifida in Scotland.

The Minister met with young people and families who benefit from the services provided by the Transition Clinic. Also in attendance were Dr Kamath Tallur, Consultant Paediatric Neurologist and the NHS Lothian team, Lawrence Cowan, CEO of SBH Scotland, and Dr Margo Whiteford CBE, Chair of SBH Scotland.

At the Royal Hospital for Children and Young People in Edinburgh, the Minister heard firsthand from Jeanette Smith, whose daughter Lucy Abeels, 16, has spina bifida and hydrocephalus, on the positive impact the Transition Clinic has had. She also heard from Louise Macdiarmid whose son Louis, 14, has spina bifida.

A Christmas Appeal making sure families get support at the most challenging of times

Last year little Amber McRae wasn’t able to spend Christmas with her family. Instead, she spent six weeks in hospital after undergoing gruelling and risky skull expansion surgery. Amber has spina bifida and hydrocephalus and the surgery was the last chance to try and bring down the pressure in her head caused by hydrocephalus and save her life.

SBH Scotland helped to support the family as they navigated this incredibly difficult time. Now Leanne and Amber are teaming up with the charity to launch a Christmas Appeal to raise funds to support other families going through the same thing this year.

Last Christmas, Amber was in hospital with her mum Leanne by her side. Although her dad Paul and her big sister Laila visited daily, it was heartbreaking for Leanne to watch them leave each day and for the family to be apart at this special time of year.

The family was terrified that Amber might not make it:

“I was shaken to the core,” recalls Leanne. “It was a really high-risk operation and there was no guarantee that she would survive it, but at that point we had run out of options.”

Celebrating the return of Gordon Ramsay Restaurants’ festive fundraiser in Edinburgh

Gordon Ramsay Restaurants’ venues in Edinburgh have welcomed the return of their ‘GReat Donate’ festive fundraiser, which raises money for Spina Bifida Hydrocephalus (SBH) Scotland.

Charity CEO, Lawrence Cowan took charity mascot, Spiney the Diney, along on Wednesday 30th October for a special campaign launch at Gordon Ramsay Restaurants’ Bread Street Kitchen & Bar on St Andrew’s Square to celebrate the return of the ‘GReat Donate’ fundraiser.

The fundraiser which sees a voluntary £1 donation being added to diner’s bills was first launched during the 2022 festive season, and it will run again this year from the 1st November until the end of December 2024.

The fundraiser has been a great success so far, with generous customers of Gordon Ramsay Street Burger and Bread Street Kitchen & Bar raising a staggering £10,641 last festive season alone.

Gordon Ramsay became SBH Scotland’s first ever Honorary Patron back in 2003 when he met the organisation’s Chairperson, Dr Margo Whiteford CBE, at the Great North Run, and has continued to support the charity for over 20 years.

Gordon Ramsay said; 

“Tana and I are delighted to continue our support of SBH Scotland. A charity so dedicated and connected to their community. The teams across Bread Street Kitchen and Street Burger Edinburgh are really proud to get behind the £1 on the bill initiative, helping to raise much needed funds for this incredible charity.”

CEO dresses up daily as dinosaur to raise vital funds

Spina Bifida Hydrocephalus (SBH) Scotland Chief Executive Lawrence Cowan has gone Jurassic this month by launching a #DineyDays Challenge to fundraise for the charity’s vital support services!

For every £100 raised, Lawrence has committed to donning the charity’s mascot ‘Spiney the Diney’ costume for a whole day. This means completing daily tasks including getting the train, doing the school run and hosting important meetings, all while dressed up as a giant blue dinosaur!

The #DineyDays Challenge kicked off on World Spina Bifida and Hydrocephalus Day on Friday 25th October and can run until the end of November but that all depends on how much is raised. Lawrence launched the challenge to raise awareness and vital funds for SBH Scotland who rely almost solely on donations to ensure families affected by complex disabilities feel unstoppable in life.