Whatever Your Reason, Walk – Lucy’s Story

Read Lucy’s story and find out about the support she and her family have received from Spina Bifida Hydrocephalus Scotland. You can make SBH Scotland your Kiltwalk Reason this year.

When Lucy was born 8 years ago, it came as a complete surprise to Mum, Jeannette, when she was told that Lucy had Spina Bifida and Hydrocephalus. No indications of Lucy’s condition had shown on any of the scans leading up to her birth, so it was an uncertain and scary time for Jeannette and the family.

There was a lot of information for Jeannette to take in, alongside the medical interventions which were taking place. Within a day of birth Lucy had her first operation to close her back and shortly after, an access device was inserted into Lucy’s head to drain fluid caused by severe hydrocephalus.

Lucy was then kept in hospital for a further 4 months during which time she had 5 different shunt operations for her hydrocephalus.

Jeannette said: “Anne from SBH Scotland visited us in hospital when Lucy was born. She was great talking me through the conditions and all the support which was available if I needed it.”


As many of Jeannette’s friends also had babies, she started to attend baby groups with them but after a year Jeannette noticed that her friends were able to do things with their babies that she couldn’t do with Lucy. At that point she decided to get back in touch with SBH Scotland and started attending their Edinburgh Family Group.

Jeannette:  “It was daunting at first as Lucy was the only baby there, but it was great for me to take in all the experiences of the other parents and see what the future may hold for Lucy.”

Since then Jeanette and Lucy have been regularly involved with the charity, attending family conferences, groups, workshops and they are currently part of the Stronger Links: Stronger Families Project.

SBH Scotland Support Worker, Rachel, also stepped in to support Lucy when she was told she couldn’t attend her local ‘Rainbow’ group with other girls her age, because of her disability.

Jeannette: “We had real problems. Rachel organised meetings with the group leaders, explaining the conditions and gave some options which would allow Lucy to attend. Finally we got it sorted and now Lucy attends the local Brownies, a group she absolutely loves.”

Groups like the Brownies are so important for children like Lucy as they’re a great way to meet friends.

Jeannette: “There are so many things that make SBH Scotland so important for us, but most importantly when you don’t know what the future holds and you need more information, they are there with links and groups to connect people. This is so important for parents and their children.”

Lucy, mum Jeanette and Kiltwalk CEO Paul Cooney
Lucy, mum Jeanette and Kiltwalk CEO Paul Cooney

You can support families like Lucy and Jeannette when you sign up for the Kiltwalk and choose SBH Scotland as your charity.

Whatever your reason, walk.