Our Lives

Amber McRae has already undergone 29 surgeries, and she is only five years old. She has spina bifida and hydrocephalus and in December 2023, she had to undergo gruelling and risky skull expansion surgery. The surgery was the last chance to try and bring down the pressure in her head caused by hydrocephalus and save her life. 

Amber was in hospital for six weeks over Christmas and New Year. Her mum Leanne says:

“It was a frightening and lonely time, but we just had to hope that everything was going to work out.”

SBH Scotland was there to support Amber and Leanne during this difficult time, with the charity’s Family Support Workers Karen and Mel visiting them in hospital:

“I remember them walking in the room and I just looked at them and got so emotional. I very much needed that support - them showing up at the hospital to support is that made such a difference.” 

Amber’s first surgery took place when she was a newborn baby to close the gap in her spine caused by spina bifida, and the operation lasted ten hours. By the time Amber was eight weeks old, she had had six surgeries because her shunt, which was fitted to ease the pressure in her head caused by hydrocephalus, kept blocking. Leanne first got in touch with SBH Scotland at this time and the charity has been supporting the family ever since.

Since she was a baby, Leanne has been bringing Amber along to SBH Scotland’s Family Groups, where she can have fun and play alongside children with the same conditions as her. Leanne also finds it beneficial to speak to parents who are going through similar things: 

“I remember at the first Family Group I went to, a wee girl in her wheelchair came whizzing in, smiling, and it melted my heart. I thought ‘look how happy they are’, even though they’ve got this diagnosis, and are disabled and in a wheelchair. It gave me some hope that if those kids can be happy and get around in a wheelchair, so could Amber.”?

With the support of her family and SBH Scotland, Amber has found the strength to navigate the many challenges that have come her way so far. She’s overcome so much in her short life but despite everything she has been through, Amber’s amazing personality shines through.

She started Primary 1 in August in a mainstream school and although it can be isolating to be the only person at the school in a wheelchair, Amber is determined to be independent and do things for herself, just like all the other children.

No matter what the future holds, with SBH Scotland’s commitment to lifetime support for everyone with spina bifida and hydrocephalus in Scotland, the charity will continue to support Leanne and Amber throughout the years ahead.

Our aim, to make families like Amber’s feel unstoppable in life!

If you’d like to help support children like Amber, get involved with SBH Scotland today, we’d love to talk to you.