Over 55 years later, Spina Bifida Hydrocephalus Scotland (SBH Scotland) is a national charity with individuals remaining at the heart of everything we do.

The Direct Services team provide a life-long commitment of support to over 4000 children, adults across Scotland affected by these lifelong and complex disabilities, including: siblings and carer support, one-to-one support in homes and schools, combined clinics in hospitals, support groups, financial advice, a helpline, play sessions, outings, and workshops. Our aims are simple; to ensure all those affected live the highest quality of life possible.

The Individuals We Have Helped
Introducing 3-Year-Old Amber

When Amber was born 3 years ago, her mum, Leanne, describes it as ‘a very scary time’. Amber was born with spina bifida and hydrocephalus and underwent several emergency surgeries within days of birth. Leanne didn’t know what to do or who to turn to and then she found SBH Scotland’s Helpline number. She called and a Family Support Worker was with them the very next day.

Providing a life-long commitment of support to over 4000 children

From support by phone, in the home and hospital, talks with Amber’s nursery staff, family groups, finance advice, and, since lockdown, with additional online groups and help moving home. SBH Scotland have been with Amber, Leanne, and her family every step of the way, providing much-needed support throughout the pandemic.

During Covid-19 has been especially difficult for Amber as clinics that Amber would routinely attend were cancelled repeatedly which left Leanne struggling. Amber also missed the opportunities to socialise with other children her own age at groups which were also cancelled. This is where the groups and online catch ups provided by SBH Scotland are especially important.

“The charity means so much to us. They continue to support people in whatever way possible and if they were to go, I don’t know what we would do. The charity offers catchups, which are now done remotely, where families can share experiences. These sessions make you realize you are not alone; if you need to ask advice there are families who have gone through the same things as you. That’s why SBH Scotland’s work and support is so important and, I can’t thank them enough. It’s been hard on everyone but for people in my situation even more so .”

Amber continues to make progress and thanks to her dynamic stander and Scotland’s smallest wheelchair, she’s also working on building up her strength. Best of all she’s a happy girl who amazes her family and the SBH Scotland support team every day.