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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.

SBH Scotland surprises shoppers with flashmob on Burns Day

A Burns inspired charity flash mob surprised shoppers on the 25th January at St. Enoch Centre in Glasgow. Organised by Spina Bifida Hydrocephalus (SBH) Scotland, the lively celebration paid homage to the great Scottish bard Robert Burns, while raising awareness for the charity’s vital cause.

Kick-starting the Burns Night celebrations, students from Theatre College of Scotland performed a medley of traditional Scottish songs including Caledonia and Flower of Scotland to delighted onlookers whilst SBH Scotland representatives collected donations from generous shoppers. Families who are supported by the specialist charity were also in attendance to join in the fun.

Sean Carr, who attended the flash mob with his son Andrew said, “We were delighted to be involved today. Since Andrew’s spina bifida diagnosis at our 20 week scan, SBH Scotland have been a big part of our lives. They brought positivity when we felt devastated and they have given Andrew confidence in his own abilities. It doesn’t matter that he has to use a wheelchair and walking sticks because with SBH Scotland he knows he’s not alone, he’s not the only one; we have a community of support.”

Sharon's Rolling Challenge raises over £750

SBH Scotland member, Sharon Mottram, has been inspired to take on a 177 mile challenge for our charity, Spina Bifida Hydrocephalus (SBH) Scotland whom she says came into her life at just the right time.

Sharon has the complex condition spina bifida and has always been a member of SBH Scotland. However, 4 years ago a chance communication with us changed Sharon’s life for the better.

Sharon explains, “Just over 6 years ago I had an accident which left me in a wheelchair. It was a big change to my life at a time when I was already going through a lot of other issues. Everything got too much for me and I was left feeling anxious and really low. I was at the point where I didn’t even like to leave the house. Then one day a letter came through the door inviting me to an SBH Scotland event. I couldn’t go to the event but when I called the support worker, Wendy, asked if she could come to visit me instead, and the rest is history!

She continued, “They’ve been a massive part of my life ever since; offering a lot of home support, getting me to join their adult social groups online and offering an SBH Scotland counsellor. It’s no exaggeration when I say If it wasn’t for SBH Scotland, I don’t know where I’d be today.”

It was this level of dedicated support that put the wheels in motion for a sponsored challenge. Sharon decided that for 40 days she would try to cover as many miles as she could whilst raising money for the charity she knew were facing a tough challenge this year financially. By the start of May she’d covered a tremendous 177 miles with some tricky challenges en route and visiting Whitehills, Portsoy and other coastal routes.

Sharon added, “Most of the time I really enjoyed it but one day I tried a different route and found myself rolling down a very steep embankment. I stopped only when I got stuck on a grass verge – it was quite terrifying! And on a few occasions I wasn’t feeling well enough to continue so my fabulous friends Nathan and Sarah along with my son Haydn, stepped in to do a walk for me on those days, for which I’m very grateful.”

Lynsey Hamilton, fundraising manager at SBH Scotland said; “We’re incredibly grateful to Sharon for all the effort she put into this challenge. We need to raise over £1 million each year to provide our range of dedicated support services to children, young people and adults across Scotland. Sharon’s amazing donation is so far totalling £755 and will go towards support for other charity members like Sharon so a massive thank you to all those who donated to her.”

For information on spina bifida visit our information online.

Would you like to speak to one of our Support Workers, or do you need information? Email our team now.

Fancy creating your own challenge for SBH Scotland, contact our Fundraising Team today.

SBH Scotland win the Scottish Power Education Award

We are delighted to announce that from a shortlist of exceptional organisations, SBH Scotland has been awarded the Scottish Power Foundation's 'Education Award' as part of their annual awards. Winners in each category receive an additional £5,000 funding boost, with runners-up receiving £2,500.

Scottish Power said, "The judges recognised its [SBH Scotland] brilliant work to help children with spina bifida to be fully included in the learning experience! 👏👏🙌"

"The judges recognised the charity’s work to support each child individually and to tailor its support to their bespoke needs. For example, it worked with partner organisations to ensure one child who required crutches to get around was able to fully participate in sporting activities at his school".

SBH Scotland was also praised for our work celebrating what makes our children unique and ensuring they all have the best possible start in life.

In addition, our member and fundraiser Lucy Abbeels received the Runner Up award for 'Charity Champion of the Year' for her consistent commitment to raising funds and awareness for our charity. Congratulations Lucy and thank you for your support.